Patients with epilepsy on Medicaid insurance of Black, Latino, and Native Hawaiian and Other Pacific Island ethnicity were associated with lower odds of being on newer, second- and third-generation, antiseizure medications compared with White individuals.
Prescriptions for newer antiseizure medications (ASMs) among Medicaid patients with epilepsy are less likely to be given to Black, Latino, and Native Hawaiian and Other Pacific Island individuals, according to findings published today in Neurology Clinical Practice.
As the primary treatment for people living with epilepsy, ASMs are categorized into 3 generations, based on the chronology of their availability in the United States: first-generation ASMs (eg, carbamazepine, phenytoin, and valproate), second-generation ASMs (eg, gabapentin, levetiracetam, and zonisamide), and the newest third-generation ASMs (lacosamide and perampanel).
Finding the right medication is often a trial-and-error process that is based on the individual patient, noted lead study author Wyatt Bensken, PhD, of Case Western Reserve University in Cleveland, Ohio, in an accompanying press release. However, Bensken added that studies have shown that use of newer medications improves outcomes, and some newer medications have fewer adverse effects.
There has been an increase in use of third-generation ASMs, but geographic differences have been observed. “Layered on these patterns of usage is the observation that there are racial and ethnic differences in adherence to ASMs, with minoritized populations having overall lower adherence,” said the study authors.
They sought to further investigate whether there were racial/ethnic differences in use of newer ASMs, specifically 2 main outcomes: adherence to ASMs, as measured by the proportion of days covered, where less than 0.8 represents not adherent, and being on a newer-generation (second or third) ASM.
Researchers looked at 5 years (2010–2014) of Medicaid claims data from 15 states for adults who filled at least 2 prescriptions for epilepsy drugs and were in the 18-to-64 age range. Multilevel logistic regression models were used to examine the association between newer-generation ASMs and adherence. Racial/ethnic differences in ASM use were then compared in models adjusted for demographics, utilization, year, and comorbidities.
The racial/ethnic categories included American Indian or Alaskan Native (AIAN), Asian or Pacific Islander, Black, Hispanic, Native Hawaiian or Other Pacific Islander (NHOPI), Other, and White.
A total of 78,534 adults with epilepsy were included in the analysis, of which a majority, 41,975, were White; 17,729 Black; 505 AIAN; 1246 Asians; 9376 Hispanics; 1154 NHOPI; and 6549 Other. Overall, 25.6% of patients were on older, first-generation ASMs, with 65.1% on second generation and 9.3% on third generation.
Compared with White individuals, findings indicated that Black (adjusted odds ratio, Hispanic , and NHOPI individuals had lower odds of being on newer ASMs. AIAN individuals conversely showed increased odds of being on newer ASMs compared with White patients, but the relationship was less clear for Asian individuals.
Moreover, patients who saw a neurologist or who had a new diagnosis had higher odds of being on newer ASMs. Black and Hispanic individuals had lower odds of being on a newer ASM whether they saw a neurologist or not compared with White individuals.
Regarding adherence, being solely on second-generation ASMs during the study period was associated with better adherence, as was being on third-generation ASM . Black individuals were shown to be the least likely to be adherent to ASMs compared with White patients, followed by Hispanic ( and Asian patients.
“While further study is needed to understand these differences and the mechanisms behind them, these critical gaps in care may represent disparities that can be addressed and that warrant greater attention,” Bensken said. “Changes that could be made include increasing referrals to neurologists and exploring whether a newer drug may be as effective as an older drug but with fewer side effects, which could increase the likelihood that people take all their doses.”
The sole inclusion of patients who filled at least 2 prescriptions for epilepsy drugs was cited as a key limitation for the study findings as it excluded people with epilepsy who were untreated, a population experiencing potentially even greater inequities in care.
Reference
Bensken WP, Baca Vaca GF, Alberti PM, et al. Racial and ethnic differences in antiseizure medications among people with epilepsy on Medicaid. Neurol Clin Pract. 2023;13:e200101. doi:10.1212/CPJ.0000000000200101
Pet Ricky Gervais saved owner Carrie after she stopped breathing in her sleep numerous times by meowing loudly to wake her. He now rests in an urn alongside Karl Pilkington and Homer Simpson
A grief-stricken mother and daughter are remembering their heroic cat named Ricky Gervais, who saved his owner’s life one final time in the last painful hours he had left before he died.
Mary Nesbitt-Larking and her mum Carrie, who live together in Hertford, were amazed when Ricky started waking Carrie up when she stopped breathing due to sleep apnoea and chronic obstructive pulmonary disease – meowing to alert them to the danger.
However, just before Christmas, Ricky started dribbling uncontrollably and the pair were thrown into despair as vets revealed he had epilepsy and a brain tumour, leaving the cat disoriented and aggressive towards his family.
Despite his health issues, the cat named after the comedian and actor kept saving Carrie, waking her up multiple times in the last few days of his life.
He died on December 28 in the arms of Mary, who said she told him she would “keep mum safe” and “keep my eye on her for him”.
Ricky now rests in an urn next to Karl Pilkington and Homer Simpson – two of the family’s other late cats, who they described as Ricky’s “brother” and “nephew” respectively.
“The only consolation is that he’ll now be reunited with Karl Pilkington and Homer Simpson, both of whom he loved so dearly,” said Mary, 30.
“I’m heartbroken for mum as they were so close. I can’t imagine how scary it must be for her.”
After he was adopted in 2012, after he “wandered” through their cat flap one day, the black cat took an instant liking to Mary’s mum Carrie.
“Ricky loves mum. He just looks at her with love in his eyes. He’s so cuddly and gives mum that reassurance,” said Mary.
Carrie’s health conditions mean she risks compromising her breathing if she falls asleep in the wrong position, leaving her anxious and scared of drifting off unexpectedly.
However, Carrie and Mary were amazed when Ricky almost immediately started waking her up when her breathing was compromised.
“As soon as he arrived he seemed to just know when mum was struggling to breathe in her sleep,” said Mary.
“He started letting out a particular meow to alert us… it’s extraordinary.”
Mary said the family felt “so much safer knowing that Ricky is watching over mum”.
Thanks to Ricky, Carrie felt she could sleep soundly, but at the beginning of December Mary noticed he wasn’t himself.
“He was sort of dribbling,” she said.
“His face was absent, he was just staring off into the distance. It turned out that he’d been having petit mal seizures and eventually those turned to grand mals.
“The vets gave us epilepsy medication.”
When the medicine didn’t work and Ricky became aggressive, the pair knew it was time to same goodbye.
“We thought it was helping, but after a week or so, his symptoms worsened,” she said.
“He was biting our phones where he seemed to want to relieve pain in his head. He was pressing his head on my mum as hard as he could.
“The saddest part was that he became aggressive with both mum and the other cats. He’d never done anything like it before in his life.
“The vets thought the epilepsy was probably secondary to a brain tumour, that had possibly been growing very slowly for a long time.
“His eyes were so haunted, and he kept looking at us with such a sad desperation that we made the difficult decision to have him put to sleep.”
Even in Ricky’s last hours he was determined to take care of Carrie.
“Even on his last night when he was really confused, he still managed to come in the room to wake mum up,” said Mary.
“It was like he always knew, even when he wasn’t himself and he was in so much pain, he still knew that mum needed help.
“Ricky loved mum; she was his person. He followed her everywhere. Even in his last moments, he was still helping her.”
On December 28 Ricky was put to sleep.
“He died in my arms, and the last thing I said to him as he slipped away was that I would keep mum safe for him,” said Mary.
“He was her right-hand man, best friend and little guardian angel. He saved her life on multiple occasions, and I can’t even begin to imagine how scary and sad this must be for her.
“I’m trying to stay on the ball and keep my eye on her for him.”
In a personalised urn, the cat now rests next to Karl Pilkington and cartoon-inspired Homer Simpson.
“We keep all the cats we’ve lost together on a shelf,” said Mary.
“Each urn is personalised to the cat we lost. Michael Jackson the cat was quite feminine so he has one that suits him.
“Karl Pilkington was outdoorsy and tough, so we got a forest design on his.
“We got a white teardrop-shaped urn for Ricky as well as a clay paw print. It was really beautiful.
“We also got a clipping of his fur that we keep in a beautiful bag next to the urn. We let the other cats sniff it as they miss him so much, especially Kristen Stewart.”
Carrie, 56, said she is sure Ricky is still looking out for her. “He’s sorely missed,” she said.
“He was so friendly and so sweet; he would always run to me and lie on my chest.
“But I feel like his spirit is around me. I’m meant to use a machine every night but when I drift off during the day, I don’t have it, so I do get worried about falling asleep.
“I suffer from bad claustrophobia, so I don’t like using my sleep apnoea machine. I wake up in the night panicked, trying to rip the mask off.
“But ever since we lost Ricky I have been sleeping on my side, which lowers the risk of it affecting my breathing.
There’s a complex relationship between seizures and alcohol. Heavy, long-term alcohol use and withdrawal from alcohol can lead to seizures. Alcohol can also trigger seizures if you have epilepsy and often interacts poorly with anti-seizure medications.
In this article, learn what alcohol does to the brain, how it can lead to seizures, and what you need to know about alcohol use if you already have a seizure disorder.
How Alcohol Affects the Brain
Alcohol affects the way brain signals travel and communicate. When these signals are disrupted, the following symptoms can appear:
Balance problems
Blurred vision
Slurred speech
Memory problems
Balance and movement issues caused by alcohol consumption may resemble a seizure, but seizures are more commonly associated with heavy or long-term alcohol use.
People who drink a lot of alcohol for an extended period can develop permanent changes in their brains, and removing alcohol can lead to withdrawal symptoms. Seizures, and a severe condition called delirium tremens, are possible complications of alcohol withdrawal.
Can Alcoholism Cause Epilepsy?
People who drink heavily for an extended period may experience seizures if they stop using alcohol, even for a brief time. Seizures are often associated with alcohol withdrawal.
Delirium tremens is the most severe form of alcohol withdrawal and affects about 2% of people with alcohol use disorder.
Seizures and other hyperactive responses are common with delirium tremens and include other symptoms such as:
Hallucinations
Delirium
Altered consciousness
Nausea
Alcohol withdrawal can be dangerous for many reasons, but seizures and the possible development of delirium tremens increase the risk of severe complications or even death.
Alcohol and Seizure Risks
Light, infrequent drinking isn’t linked to seizures, but people who are regular or heavy alcohol users have an increased risk of alcoholic tremors or seizure activity. Though alcohol can trigger seizures, they are more often linked to withdrawal from alcohol if your body has developed a tolerance for it and dependency on it.
Alcohol Withdrawal and Seizures
Alcohol withdrawal happens when you consume alcohol heavily or regularly enough that your body has developed a dependence on it. When you are dependent on alcohol and go without it, you may experience symptoms of withdrawal that can include the following:
Restlessness
Anxiety
Shakiness
Nausea
Irritability
Symptoms are generally mild during the first 12–24 hours of withdrawal but increase in intensity around the third day without alcohol. This is usually when seizures can occur if they do at all.
Is It Safe to Drink Alcohol if You Have Epilepsy?
People with epilepsy are usually advised to avoid alcohol because it can increase the risk of seizure activity. Moderate to heavy alcohol use is associated with a higher risk of seizures in people with epilepsy; roughly 18% of people with epilepsy reported increased seizure activity after consuming alcohol in a 2018 study.
A report from 2021 also found that alcohol-related deaths were five times more likely in people with epilepsy than those without the condition.
Risks
Alcohol use can trigger seizures in people with epilepsy. Those with epilepsy who have alcohol dependence and stop drinking suddenly have an additional risk of withdrawal-induced seizures.
Interaction With Anti-Seizure Medications
Another one of the big reasons people with epilepsy are warned not to consume alcohol is that many of the anti-seizure and anti-epileptic drugs that treat epilepsy do not mix well with alcohol. Most of these medications lower your alcohol tolerance, causing you to become intoxicated or feel the effects of alcohol more quickly or severely.
How Much Is Too Much?
Alcohol consumption and its impact on your mind and body depend on the individual. Your body size, gender, metabolism, and genetics can affect alcohol tolerance and dependence.
Generally, heavy drinking is defined as:
More than eight drinks per week for women
More than 15 drinks per week for men
Binge drinking (heavy drinking in a short period or single occasion) is considered:
More than five drinks on one occasion for men
More than four drinks on one occasion for women
Although these are general guidelines, your tolerance or consumption recommendation can vary based on your overall health, size, and medical condition.
Summary
Heavy alcohol use can lead to seizures, especially when you stop drinking and start to enter a period of withdrawal. However, if you have a seizure disorder or epilepsy, you also face risks when drinking alcohol—both from the increased risk of seizure activity and potential interactions with seizure medications.
FREQUENTLY ASKED QUESTIONS
What is considered excessive alcohol consumption?
The amount of alcohol considered excessive depends on your gender, size, and metabolism. Generally, more than eight drinks for women and 15 drinks for men per week, or more than four drinks for women or five drinks for men in one sitting, is considered excessive.
What are the most common triggers of seizures?
Alcohol is one possible seizure trigger, but there are many more. Flashing lights, lack of sleep, missed medications, and even diet changes have the potential to cause seizures in some people.
Can you treat epilepsy without medication?
Antiepileptic medications are the most common way to treat seizures, but you can also make diet and lifestyle changes that may help. Switching to a ketogenic diet or practicing yoga may help reduce or limit seizure activity. There are also surgical options or seizure devices that may help. Talk to your healthcare provider about the right treatment plan for your specific seizure disorder and lifestyle.
Summary: During absence seizures, most neurons showed decreased activity. This, researchers say, explains the decrease in brain function and impaired consciousness during an absence epilepsy seizure.
Imagine slipping in and out of consciousness hundreds of times per day, staying awake the whole time but having no sense of awareness during these lapses.
In children with absence epilepsy, these highly disruptive episodes are known as absence seizures. Children experience brief staring spells, during which they temporarily lose consciousness. Absence seizures can be captured by abnormal rhythms on EEG recordings, but their neuronal cause has never before been identified.
Using a genetic model known as Genetic Absence Epilepsy Rats of Strasbourg (GAERS), Yale researchers have identified the neuronal basis for this condition.
Their findings were published Jan. 10 in Nature Communications.
“First, we studied behavior during seizures using an auditory response task, and a spontaneous motivated licking liquid reward task,” said senior author Dr. Hal Blumenfeld, the Mark Loughridge and Michele Williams Professor of Neurology and professor of neuroscience and neurosurgery at Yale School of Medicine.
“Next, we imaged the rats using functional magnetic resonance imaging [fMRI] to map brain activity during seizures. Finally, we recorded electrical signals from the brain using EEG and electrical signal from single neurons using multi-contact silicon probes.”
The experiments were led by Cian McCafferty, who at the time was a postdoctoral fellow at Yale and is now a lecturer and principal investigator at University College Cork. The team observed that not only do the rats’ response to external stimuli mimic those of children with absence epilepsy, but the rats also revealed four different types of neuronal activity during seizures.
“Most neurons showed sustained decreases in activity during seizures, explaining the decreased brain function and the impaired consciousness seen during absence seizures in both rats and children,” Blumenfeld said.
“However, some neurons showed sustained increases during seizures, some showed transient increases at seizure onset only, and others showed no change.”
Defining four types of neuronal activity could result in more customized treatment for children with absence epilepsy, selectively targeting a certain type of neuron and causing fewer side effects.
Perhaps most importantly, Blumenfeld said, the recordings of electrical brain signals from this study could help epilepsy specialists prevent seizures in the first place and treat patients before their onset.
Having completed this first-of-its-kind study with a rat model, Blumenfeld and his team hope that children whose everyday lives are disrupted by losses of consciousness during absence epilepsy seizures will be able to regain a sense of normalcy and return to the activities they enjoy.
About this consciousness and epilepsy research news
Abstract
Decreased but diverse activity of cortical and thalamic neurons in consciousness-impairing rodent absence seizures
Absence seizures are brief episodes of impaired consciousness, behavioral arrest, and unresponsiveness, with yet-unknown neuronal mechanisms.
Here we report that an awake female rat model recapitulates the behavioral, electroencephalographic, and cortical functional magnetic resonance imaging characteristics of human absence seizures. Neuronally, seizures feature overall decreased but rhythmic firing of neurons in cortex and thalamus.
Individual cortical and thalamic neurons express one of four distinct patterns of seizure-associated activity, one of which causes a transient initial peak in overall firing at seizure onset, and another which drives sustained decreases in overall firing. 40–60 s before seizure onset there begins a decline in low frequency electroencephalographic activity, neuronal firing, and behavior, but an increase in higher frequency electroencephalography and rhythmicity of neuronal firing.
Our findings demonstrate that prolonged brain state changes precede consciousness-impairing seizures, and that during seizures distinct functional groups of cortical and thalamic neurons produce an overall transient firing increase followed by a sustained firing decrease, and increased rhythmicity.
In various European countries and North America, medical cannabis or medicines based on cannabinoids are authorized for therapeutic purposes. While the cannabis plant contains over 100 cannabinoids, THC (D9-tetrahydrocannabinol) and CBD (cannabidiol) are the two best-known and characterized constituents.
THC and CBD are administered under different pharmaceutical forms, showing therapeutic effects such as pain and inflammation relief. However, little is known about how THC and other cannabinoids work in the human body at the molecular level.
Based on clinical trials, cannabinoid-containing medications can help to alleviate symptoms of mental disorders such as epilepsy, Alzheimer’s disease, asthma, and cancer, and help prevent weight loss during clinically challenging treatments for AIDS and different forms of cancer.
EMBL Grenoble researchers have investigated the interaction between THC and some proteins it might bind to. In a recent study, they showed in vitro that THC inhibits an important human enzyme called autotaxin. This enzyme is involved in many different cellular functions, specifically producing a molecule called lysophosphatidic acid (LPA), which stimulates cell proliferation. A dysregulation of LPA production can lead to development of cancer, inflammation, or pulmonary fibrosis. Autotaxin is therefore a major target for drug development.
New molecular insights on THC
Understanding how THC and other cannabinoids interact in our cells at the atomic level would help to administer THC more efficiently in therapeutic contexts.
The field of structural biology is particularly relevant to obtain this kind of information. Structural biologists focus on elucidating at the atomic scale the three-dimensional structure of molecules, like proteins or enzymes, and how they interact with each other. These structural results further lead to understanding molecules’ particular function and how to modulate their activities with specific compounds – which are crucial insights to develop effective drugs.
The first step in structural and biochemical studies is to determine how a specific component interacts with molecules in vitro – meaning in the controlled environment of the laboratory – before going for further investigation in vivo, in living organisms.
During their investigation of THC, the McCarthy team obtained the three-dimensional structure of the THC cannabinoid bound with autotaxin. By employing macromolecular crystallography with EMBL’s beamline at the PETRA III synchrotron in Hamburg, they could lay the molecular basis of how THC inhibits this enzyme.
A path to further investigations
Identifying this enzyme as a binding target for THC expands the knowledge on this cannabinoid and provides more data on its possible therapeutic effects at the molecular level and how medical cannabis might contribute to therapy.
Autotaxin is an essential enzyme in human beings. It is responsible for the production of LPA, a major membrane-derived lipid signaling molecule that mediates many different cellular functions. Dysregulations of LPA production by autotaxin are known to have a role in the development of cancer, inflammation, or pulmonary fibrosis.”
Mathias Eymery, PhD student on the McCarthy team and first author of the publication
In vivo studies are necessary to confirm that the binding between autotaxin and THC is linked to the therapeutic effects of THC administration – as the main known targets of THC in the human body are the CB1 and CB2 cannabinoid receptors, that mediate the psychoactive and pain relieve effects of cannabinoids. Further investigation will help determine further potential of cannabinoids for medical research and drug development.
Source: news-medical.net, European Molecular Biology Laboratory, Emily Henderson
Emergency services are often faced with situations that they don’t know how to deal with. For instance, some people arrive having suffered seizures similar to epileptic incidents. However, medical tests don’t uncover any neurological origin. There are also those who suffer momentary blindness, loss of voice, or temporary immobility of a limb.
These extraordinary symptoms might last anywhere between a few hours and a couple of weeks. Moreover, as quickly as they come, they tend to disappear. That said, it’s extremely likely that those who suffer from these incidences will experience them more than once. In fact, psychogenic dysfunction, although it’s rare (affecting around two in every 100,000 people), is usually behind these kinds of overwhelmingly stressful events.
The problem is that those who suffer from these types of conditions feel misunderstood. Their environment may think that they’ve invented their symptoms to attract attention to themselves or that they have an ulterior motive. For example, it may appear rather suspicious that a teen finds themselves unable to speak when Monday arrives and they have to go back to school.
However, in all cases, someone who seems to be in pain or who suffers a sudden physical limitation should be listened to. After all, not everyone is prone to theatrics and inventing stories. Human suffering will always find certain channels to demonstrate specific problems. Sometimes, these can be the most adverse kind.
Psychogenic neurological symptoms
Psychogenic neurological symptoms are conditions that present with neurological manifestations but have a psychological origin. At present, they’re known as conversion disorder or dissociative disorder.
In the 19th century, Sigmund Freud labeled these conditions as ‘hysteria’. He defined them as situations in which the sufferer demonstrates unresolved internal conflict.
Today, there’s a better understanding of these types of disorders. The first fact to bear in mind is that they’re not voluntary or conscious acts. Indeed, those who claim to have crippling pain in their hands or suffer sudden seizures (where there’s no clear neurological condition) aren’t generally doing it for attention.
A study conducted by Ludwig Maximilians University, in Munich (Germany), confirms that these events aren’t as infrequent as we might imagine. In fact, out of 4,470 patients with neurological problems seen in the emergency room at a hospital, 405 (nine percent) were found to have psychogenic dysfunction. In other words, the trigger for their symptoms was mental.
Let’s find out some more about this often unknown clinical reality.
A patient with tetraplegia and speech problems
The University of Melbourne and King’s College, London (UK) studied the striking case of a 23-year-old woman of South Asian origin who lived in Melbourne. The psychogenic neurological symptoms that she demonstrated on arrival at the emergency room couldn’t have been more extraordinary. At one moment she exhibited quadriplegia and the next, intermittent mutism.
After a complete neurological study, she was diagnosed with conversion disorder and referred to psychological therapy. When she began working with psychologists, she no longer showed any symptoms. She only claimed to experience some tension in her jaw. As the therapy progressed, the stressful situation to which she had been subjected became clear.
As a matter of fact, this young woman could barely remember her past and her present was dominated by a deep identity crisis along with family and partner pressures. In effect, her neurological psychogenic symptoms were the response to unaddressed trauma and a life that was out of tune with her needs.
The manifestation of psychogenic neurological
Psychogenic or conversion disorders appear in many ways. The most obvious particularity is that these manifestations are extremely conspicuous and, as a rule, they have a neurological origin. They’re as follows:
Problems with coordination and balance.
Sudden paralysis in any area of the body. It’s common to feel problems walking, moving, etc.
Swallowing problems.
Loss of voice.
Blackouts.
Epilepsy-like seizures.
Double vision.
Hearing changes.
Loss of sense of touch.
Urinary incontinence problems.
The origin
Psychogenic neurological symptoms always appear suddenly. They’re also of short duration, ranging from a few hours to a maximum of two weeks.
In all cases, it’s of paramount importance to rule out a neurological origin. Indeed, whenever a professional makes a diagnosis of psychogenic or conversion disorder, they must clarify the causes.
As a rule, the trigger for psychogenic disorders is psychological trauma. Also, a stressful life can lead to these conditions.
Personality disorders, such as avoidant disorder or borderline personality disorder (BPD) can also be triggers.
The symptoms appear to a greater degree in women with a family history of conversion disorders.
The most appropriate treatment
People with psychogenic symptoms often have to deal with misunderstandings from their environment. For example, there have been cases of marines needing wheelchairs because their legs felt paralyzed. However, they were capable of walking backward. The arbitrariness of these psychogenic neurological manifestations is extremely great, which can mean the sufferer is doubted.
These patients need understanding and validation of their feelings. If their reality is denied, their suffering and, in the short term, their symptoms will increase. There must be a framework of absolute understanding with regard to each feeling of pain, physical limitation, or expressed problem.
Consequently, the therapeutic approach will be multidisciplinary:
Psychological therapy is essential. For example, cognitive-behavioral approaches or EMDR therapy if trauma is present.
Physical therapy is also helpful. It allows the sufferer to maximize physical functioning and prevent further problems. It also favors the much-needed mind-body harmony interaction.
Medical attention is essential for the possible administration of psychoactive drugs and other treatments.
Finally, it’s useful for sufferers to understand that behind their limiting physical symptoms lies an emotional trigger that must be treated. By understanding what’s happening to them, their anguish is mitigated. This encourages them to commit to psychological therapy.
Disney star Cameron Boyce, who was called “sunshine in shoes,” passed away unexpectedly in 2019, and his parents want to prevent this from happening to anyone else.
The 20-year-old actor who played Jessie and Descendants on the Disney Channel passed away in his sleep from a type of epileptic seizure called SUDEP (Sudden Unexpected Death in Epilepsy). 1
As was the case for Boyce, who according to his father Victor, “never let his epilepsy affect his life,” especially his singing and acting career as he prepared for his ascent in Hollywood, the condition is so named because it frequently affects people who were previously thought to be healthy.
Every year in the United States, SUDEP claims the lives of about one in a thousand epileptics. Moreover, it is the main reason for death in those who have uncontrolled seizures.
According to the Epilepsy Foundation, it claims more lives each year than sudden infant death syndrome (SIDS).
The “excruciating” pain of losing their adored son, whom they referred to as the “rock” of his family and friend network, was described by Victor and his wife Libby.They also discussed how shocking it was for Boyce to develop epilepsy at age 16 after only having “five or six seizures” prior to his passing.
“From thе agе of 0 to 16, hе was complеtеly normal. Hе bеgan child acting at a young agе. Hе was appеaring in print and tеlеvision commеrcials as hе grеw oldеr, according to Victor.
Aftеr a slееpovеr, onе of Boycе’s friеnds ran into thеir room thе following morning to alеrt thеm that Camеron was spitting up blood and it lookеd bad.
Whеn thеir son arrivеd at thе hospital, thе doctors informеd thе parеnts that hе had еxpеriеncеd an еpilеptic sеizurе, dеspitе thе fact that thе parеnts had actеd immеdiatеly and donе еvеrything thеy thought was right, including giving thеir son watеr to drink.
“Wе wеrе, to put it mildly, surprisеd. Wе wеrе unsurе of thе causе of his sеizurе. Victor says, “Wе didn’t know anything about еpilеpsy at that point. It changеd our livеs.
Wе arrivеd at thе hospital. Thеy еxplainеd to us a fеw things and that hе had a sеizurе. Boycе’s fatе was sеalеd at that point, according to Victor and Libby, who fеlt uninformеd for thе rеst of thеir son’s lifе, еspеcially as hе continuеd to havе sporadic sеizurеs. Thе doctor gavе us a littlе pamphlеt and sеnt us on our way.
“Nеithеr did wе know it could kill him, or how it could affеct him. Morе than thrее yеars latеr, wе’rе still in shock, says Victor.
Thеy could havе donе a lot of things as a family to hеlp prеvеnt his dеath, but thеy wishеd thеy had bееn bеttеr “armеd with thе tools to hеlp him morе.”
“Thеrе arе so many things thеy didn’t tеll that wе only lеarnеd latеr,” says Libby.
Thе parеnts’ sеnsе of hеlplеssnеss and dеsirе to prеsеrvе Boycе’s mеmory sеrvеd as a significant “catalyst” for thеir dеcision to еstablish a foundation to raisе funds for еpilеpsy rеsеarch and public awarеnеss of thе condition.
Thе Camеron Boycе Foundation was startеd by Victor and Libby bеcausе thеy wantеd to givе еpilеpsy a “facе” and knеw thеir son would want to hеlp othеrs.
Camеron was dееply involvеd in his nеighborhood. Victor еxplains that his son was anti-violеncе, involvеd in programs to gеt clеan watеr to communitiеs that nееdеd it, and was “all about gеtting young pеoplе of color into thе arts.” Hе was committеd to giving back bеcausе hе knеw hе had a platform to do so, Victor says.
Wе initially thought, “Wе can’t just lеt all his programs stop,” but as wе strugglеd to rеstart thеm, wе rеalizеd wе should concеntratе on what killеd our son.
Sincе еstablishing thе foundation, thе couplе has continuеd thеir еfforts and has raisеd morе than $1 million for еpilеpsy rеsеarch and othеr causеs Boycе was committеd to.
Thе foundation’s accomplishmеnts includе starting thе Now What? campaign.Thе onlinе rеsourcе offеrs advicе on thе nеxt stеps for thosе who havе bееn diagnosеd with еpilеpsy, dеtails on trеatmеnt facilitiеs, and has a support group spеcifically for pеoplе with thе condition. By еncouraging pеoplе to sharе thеir еxpеriеncеs with еpilеpsy using thе hashtag #еpilеpsystrong, thеy also hopе to dе-stigmatizе thе condition.
Wе simply don’t undеrstand thе undеrlying causеs of еpilеpsy in sciеncе, which is why wе bеliеvе it to bе stigmatizеd. It’s vеry еnigmatic. According to Libby, “a lot of good rеsеarch” is now bеing donе on thе illnеss. Prеviously, pеoplе usеd to bеliеvе that pеoplе wеrе possеssеd, it was somе sort of craft, or othеr forms of crazinеss.
Victor and Libby arе daring to drеam big, just likе thеir latе son, and thеy hopе that thе funds thеy raisе will hеlp find a curе for еpilеpsy.
Victor еxplains that “young pеoplе arе gеtting snatchеd lеft and right, еspеcially young mеn,” and that “thе goal is staggеring bеcausе it has to bе.”
“Othеrwisе hеalthy pеoplе arе simply passing away in thеir slееp.”
Thе griеving parеnts arе appеaling to pеoplе to support Thе Camеron Boycе Foundation in ordеr to sparе othеrs thе suffеring thеy еxpеriеncеd.
Source: technotrenz.com, Michael Kurt
CDC – SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.1
Debate continues as to whether epilepsy increases the severity of coronavirus
People with epilepsy do not appear to be at a greater risk of getting coronavirus (COVID-19) than anyone else. That said, experts suggest that as many as one in four people with epilepsy experienced more seizures during the height of the pandemic, suggesting that the virus may play a part.
It’s a fair assumption, given that COVID-19 is known to cause neurological (nervous system-related) symptoms in some, including headaches, brain inflammation, delirium, and the loss of taste or smell.
Other studies suggest that epilepsy may increase the risk of severe complications of COVID-19, although the exact cause of this is unclear.
This article will describe the possible risks of COVID-19 in people with epilepsy as well as the impact of COVID-19 on epilepsy and epilepsy treatment. It will also explain how to stay safe from COVID-19 and what to do if you contract the virus.
Epilepsy and COVID-19 Risk
Epilepsy is a group of non-contagious neurological disorders that trigger recurrent seizures. It is caused by the misfiring of nerve cells of the brain due mainly to a genetic abnormality or an injury to the central nervous system (such as from a stroke or head trauma).
COVID-19, in turn, is a contagious disease caused by a virus known as severe acute respiratory syndrome coronavirus (SARS-CoV-2). It is primarily transmitted when people breathe in respiratory droplets or small airborne particles containing the virus.
Though some early studies suggested that people with epilepsy are at greater risk of getting COVID-19, they could not explain how a non-communicable neurological disorder might place a person at greater risk of a communicable respiratory infection.
Much of the evidence gathered since then suggests that it cannot.
One of the largest studies, conducted by researchers in Sweden in 2022, could find no evidence of an association between epilepsy and the risk of getting COVID-19 based on an analysis of 1,221,801 people with a confirmed COVID diagnosis.
A similar study in Korea involving 212,678 participants concluded that epilepsy was neither linked to an increased risk of COVID-19 nor an increased risk of death from COVID-19.
This is not to say that certain individuals with epilepsy might not be at an increased risk. In the end, epilepsy is not a single disease but a neurological abnormality with many possible causes, some of which may predispose you to infection.
By way of example, older age independently increases the risk of getting COVID-19. Adults over 60 account for a high proportion of epilepsy cases due to their higher incidence of strokes. As such, the underlying cause of epilepsy may be related to age, and older age increases the risk of COVID-19.
Epilepsy and COVID-19 Complications
Despite evidence that epilepsy does not increase the risk of getting COVID-19, there are conflicting opinions as to whether epilepsy increases the risk of severe illness if you contract the virus.
The same analysis from Korea concluded that having epilepsy more than doubles your risk of severe complications of COVID-19 (defined as needing mechanical ventilation or an intensive care unit or dying within two months of the diagnosis).
Similar findings were reported in a 2021 review of studies in which epilepsy was said to independently increase the severity of COVID symptoms (although the researchers could not explain why). The study also concluded that epilepsy increases the risk of COVID-related death by around 170%.
But not everyone is convinced. Some public health experts contend there are multiple explanations for these findings and that the risk of severe COVID generally involves multiple overlapping factors.
For instance, certain medications used to treat epilepsy can suppress the immune system, including corticosteroids, adrenocorticotropic hormone (ACTH), and Afinitor (everolimus). These could potentially contribute to susceptibility by undermining a person’s immune defenses.
Statistically, epilepsy is not linked to an increased risk of severe COVID complications compared to other underlying medical conditions such as high blood pressure, obesity, diabetes, and heart disease. Though people with epilepsy may have these conditions, none are inherently linked to epilepsy in any of its forms.
The nonprofit Epilepsy Foundation states that “people with epilepsy are not at a higher risk of getting COVID-19, getting a severe case, or dying of COVID-19” based on the available research.
Changes in CDC Recommendations
Early in the pandemic, the Centers for Disease Control and Prevention (CDC) suggested that neurological conditions, including epilepsy, may be risk factors for COVID-19 despite a lack of robust evidence. Epilepsy has since been removed from the CDC advisement.
Epilepsy Complications and COVID-19
Though there remains debate as to whether epilepsy makes COVID worse, the current body of evidence does not suggest that COVID makes epilepsy worse.
Some studies have reported an increase in the frequency of seizures among people with epilepsy during the height of the pandemic. This includes a study from India in which 30.3% of people with epilepsy reported an increase in seizures during the lockdown.
Though other studies have reported similar increases, ranging from 8–35%, it is largely acknowledged that external factors account for a large proportion of these increases.
These include risk factors such as:
Anxiety and stress
Depression
Poor sleep quality
Gaps in access to medical care or medication refills
Increased alcohol or drug use
It is well known that stress, illness, fatigue, and/or the overuse of alcohol and drugs are common triggers for epileptic seizures. During the COVID lockdowns, all of these were common in people with epilepsy as well as those without.
That said, it is also possible for a seizure to be induced by fever. These types of seizures, known as febrile seizures, are commonly associated with viral infections like COVID-19 and are frequently seen in children with or without epilepsy.
Seizures may also be triggered by COVID-related meningoencephalitis (inflammation of the brain and surrounding tissue), although this is considered rare.
Despite suggestions of an increased risk, seizures are still considered uncommon compared to other possible complications of COVID-19.
Treatments and COVID-19
It is possible that certain COVID-19 medications can interact with certain anti-epileptic drugs (AEDs) that treat epilepsy.
By way of example, Paxlovid (nirmatrelvir/ritonavir), an antiviral drug granted emergency use authorization for the treatment of COVID-19, is one such medication whose action may be reduced if taken with the following AEDs:
Aptiom (eslicarbazepine)
Banzel (rufinamide)
Depakote (valproate)
Dilantin (phenytoin)
Luminal (phenobarbital)
Nembutal (pentobarbital)
Sympazan (clobazam)
Trileptal (oxcarbazepine)
Tegretol (carbamazepine)
Other frontline drugs for treating COVID-19 may also interact with these same AEDs, including Veklury (remdesivir), an intravenous (IV) drug approved for treating hospitalized people with COVID-19.
Dose Adjustment
If you are prescribed treatment for COVID-19, advise your healthcare provider of any drugs you take for epilepsy. In some cases, the dose of the anti-epilepsy drug will need to be temporarily reduced to avoid an interaction.
As previously mentioned, there have also been suggestions that certain immunosuppressant drugs, like corticosteroids and ACTH, may lower your immunity and make you more vulnerable to COVID complications. Even so, there is not much evidence to support the hypothesis.
Discontinuing these drugs may be unnecessary and increase your risk of seizures. Never stop or adjust the dose of your AEDS without first speaking with your healthcare provider.
How to Stay Safe
If you have epilepsy, your need to avoid COVID-19 is no different than anyone else’s. Even if epilepsy doesn’t inherently increase your risk of severe illness or worsening seizures, you may have other underlying medical conditions that do. This includes older age.
Regardless of whether you have epilepsy or not, the first step to avoiding infection is to get the COVID-19 vaccine along with booster shots as recommended by your healthcare provider.
Among the other preventive strategies:
Avoid close contact with anyone who is sick.
Wash your hands frequently with soap and water for at least 20 seconds or use an alcohol-based hand sanitizer that contains at least 60% alcohol.
Wear a face mask if you are at high risk of COVID-19 and the community infection level is medium. When levels are high, everyone should wear a face mask.
Cover your mouth and nose with your elbow or a tissue when you cough or sneeze.
Avoid touching your eyes, nose, and mouth.
If exposed to COVID-19, the CDC recommends that you wear a high-quality face mask for 10 days and get tested on the fifth day.
If you test positive, stay home for at least five days and isolate yourself from others. You should stay away from work or school until you are free of fever and other symptoms for at least 24 hours without the use of fever-reducing drugs.
Be sure to refill your prescription on time so that you never run out of your anti-epilepsy drugs. If you are feeling stressed or depressed while in isolation, don’t reach for an alcoholic drink because this may increase your risk of seizures. Instead, talk with a friend, your healthcare provider, or an online epilepsy support group.
Summary
Epilepsy is not associated with an increased risk of getting COVID-19. Though some studies suggest that epilepsy may put you at risk of severe complications, the evidence is generally lacking and most research suggests that other factors (including older age and other underlying medical conditions) may play a more significant role.
The same applies to studies suggesting that COVID may lead to more seizures in people with epilepsy. Common triggers like stress, depression, alcohol use, or gaps in medical care are thought to contribute more than the virus itself.
A Word From Verywell
Any illness can potentially trigger a seizure in people with epilepsy, particularly when your immune system is down. If your seizures are more frequent or harder to control, speak with your healthcare provider.
It is possible that an adjustment in your medications or lifestyle can set you right again. And by feeling healthier and stronger, you may be more able to avoid COVID-19 or cope if you get it.
FREQUENTLY ASKED QUESTIONS
Can COVID-19 vaccines causes seizures?
According to the Epilepsy Foundation, any vaccine can trigger a fever, which could theoretically cause a breakthrough seizure (meaning one that occurs while you are on anti-epilepsy drugs). Even so, the risk of this is small, and there is no evidence that the COVID vaccine causes the worsening of epilepsy.
Can COVID-19 cause epilepsy?
COVID-19 has been known to cause new-onset seizures occasionally. Scientists are unsure why this is, although some believe it may be due to a “cytokine storm,” in which inflammatory chemicals overwhelm the body. Even so, these seizures tend to be one-time events. They are not technically considered epilepsy (because epilepsy is characterized by recurrent seizures).
COVID-19 has been known to cause neurological (nervous system-related) symptoms in some people, the most common of which include:
A loss of taste and smell
Headache
Fatigue
Loss of concentration
Nerve pain
Sleep problems
Dizziness or fainting when rising
Depression
What are the neurological symptoms of COVID-19?
Source: verywellhealth.com, James Myhre, Dennis Sifris, Geetika Gupta
A review explored the connection between 4 domains (structural, sociocultural, health care, and physiological) contributing to the persistence of inequities in epilepsy risk and outcomes in the United States, as well as key areas of intervention to promote health equity.
Although most epilepsy research to date has identified several key areas of disparities, authors of a review published in Epilepsy Research noted that a multilevel life course model of epilepsy development, diagnosis, treatment, and outcomes was warranted to highlight how these disparities represent true inequities.
Epilepsy is a chronic health condition that is particularly complex in its antecedents, development, progression, treatment, and outcomes. Disparities and inequities in risk and outcomes of the disease are considered multifactorial, with differences observed between groups within countries as well as between high-, middle-, and low-income countries.
Identifying 4 key domains (structural, sociocultural, health care, and physiological) that contribute to the persistence of inequities in epilepsy risk and outcomes in the United States, the study researchers reviewed and discussed these factors individually and their connection as well. Key areas of intervention were also explored that strive toward health equity.
“The goal of this work is to highlight these domains while also providing epilepsy researchers and clinicians with broader context of how their work fits into health equity,” said the study authors.
Structural Factors
Social determinants of health that contribute to the maldistribution of health-promoting resources among patients with epilepsy was first spotlighted as a major influence on inequities in disease risk and outcomes. Whether its availability of transportation and physical access to care, employment and its connection with insurance, or financial access to care, US patients with epilepsy may face structural barriers that contribute to adverse health outcomes, disease-related effects, and quality of life.
Patients with epilepsy have limited authorization to drive motor vehicles due to the incidence of seizures, which the researchers said creates an additional disadvantage for people with already limited economic means or who live in rural areas.
“Some states have mandatory reporting of a seizure by physicians, and thus can create a situation where a patient may be less likely to report a seizure to their health care provider for fear of losing their ability to drive,” said the study authors. “Without robust care for a person with epilepsy, there is a greater risk for breakthrough seizures that can cause serious injury or death.”
Tackling inequities caused by structural factors necessitates policies such as Medicaid expansion, funding and availability of public transportation, and assistance for those unable to work as a few avenues, noted researchers.
Sociocultural Response to Disease
Culture and cultural influences are known to have positive and negative effects on health and health outcomes. And for epilepsy, the researchers highlight that there are deeply held beliefs about what causes seizures in some cultures and religions that create stigma, and perhaps delays in seeking appropriate treatment for some individuals.
“With limitations on employment and driving after a seizure, social support is usually required in the initial stages of epilepsy diagnosis and treatment, potentially creating a caregiver burden and decreased quality of life,” said the authors.
Positive social support has been shown to help reduce the impact of stigma, while lack of this social support could exacerbate certain comorbidities, such as depression. The policy-driven maldistribution of resources should be considered as part of a health equity framework, noted the researchers, as patients of these communities may be more susceptible to either the positive or negative effects of a social response to disease.
Health Care Factors
Along with the structural barriers that may impede access and accessibility to epilepsy care, biases within the health care system is an additional influence on health inequities. These issues include treatment modalities that differ among racial and ethnic groups, individual level interactions, and interpersonal issues between a doctor or nurse with a racial and ethnic minority patient.
Adherence to medication is crucial to controlling seizures, but there are patients who are treatment resistant and may be candidates for surgery. “However, it’s possible that patients from communities that have experienced bias may be less comfortable advocating for themselves to undergo pre-surgical evaluation and are more quickly blamed for poor adherence, rather than being diagnosed with treatment-resistant epilepsy causing these breakthrough seizures,” noted the authors.
Insurance coverage and medication costs are additional factors that may impede quality of care, which disproportionately affect marginalized communities. Addressing inequities in the context of health care requires action against individual and structural bias, said the researchers, including initiatives that embrace health equity, quality improvement, and patient safety competencies at the practice level.
Physiological factors
For epilepsy, there are 3 physiological components that are important to consider: genetics, epigenetics, and pharmacogenomics; the microbiome; and comorbidities. The researchers noted that the maldistribution of health-promoting resources can enhance the effect of underlying physiological processes in disease development and management, generating more and larger inequities in prevalence and outcomes.
Regarding epigenetics, knowledge is still emerging on the transgenerational nature of these changes. Initiatives aimed at addressing the perpetuation of inequities from historical policies and practices for certain minoritized populations are likely to take generations to produce an observable impact and thus warrant timely attention.
“Historical policies and events have set the stage for a lack of research and understanding in minoritized populations, amplifying the divide in the ability to access appropriate genetic testing and the continued deleterious effects of epigenetics,” the study researchers wrote.
They concluded that the framework presented in the review is, “Not just intended to provide a broad overview of the pathways in which inequities in epilepsy and epilepsy outcomes develop, but rather to develop a model for interventions to address these inequities.”
“Adaptation and implementation of the model, in epilepsy research and practice, will continue to advance epilepsy health equity.”
Purple Day®, celebrated annually on March 26th is the largest grassroots effort dedicated to increasing awareness about epilepsy worldwide. It was created in 2008, by then nine-year-old Cassidy Megan. Motivated by her own struggles with epilepsy, she wanted to get people talking about the condition to dispel myths and inform those with seizures that they are not alone.
As the global sponsor, The Anita Kaufmann Foundation has teamed up with The Epilepsy Association of Central Florida again, to create and develop a comprehensive event for the epilepsy community. This event is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to direct epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about services and supports available to them.
Planning is still in the works, but you can expect:
Comprehensive Epilepsy
Expo Epilepsy education, resources, and advocacy materials
Meet and Greet with Purple Day® founder Cassidy Megan
It was in their late teens, while playing the piano after a few drinks that Liza Bec had the first inkling that something might be wrong.
A prodigious musical talent, Liza, who grew up in North End and Waterlooville, recalls: ‘When I was 18-19, and playing piano while drunk, my hands would twitch, but I’d just think it was because I was drunk. I was at university once when it happened and someone said they thought I might have epilepsy, sort of as a joke. I didn’t have any idea.’
It ultimately transpired that Liza has music-triggered epilepsy, a condition which affects only one in 10m people – but for each person there is a different trigger. For Liza it is triggered by playing certain patterns of notes.
Liza, 42, was introduced to music from a young age – Liza’s parents noticed them dancing around to the records they played so thought they would try sending Liza to lessons with kindly neighbour Gwen Clutterbuck who would only charge the local children 50p a time. Liza remembers her fondly: ‘It was like her retirement project – she wanted to introduce kids to music, she was amazing. I learned piano, recorder and singing from the age of four because of her – we could never have afforded it otherwise.’
Liza went on to play with numerous local orchestras and bands while growing up, including particularly the Highbury Area Band, and took part in the Portsmouth Musical Festival.
‘Portsmouth was a great place to grow up musically, Highbury Area Band doesn’t exist any more unfortunately, but it was a really amazing thing.’
Liza went to Portsmouth High School on a scholarship and remembers the help of another local musical luminary – Steve Tanner, founder of the Solent Symphony Orchestra and Liza’s clarinet teacher, who gave them one of his own clarinets.
Liza achieved grade eight distinction on the recorder aged 12 and made their concerto debut with the band of the Royal Marines at the same age. The first person in their family to attend university, they studied geology at the University of Oxford. They then completed a masters in classical clarinet performance at Trinity College of Music, London, where they were awarded a distinction and the Hambleton Clarinet Prize.
But that problem with the twitching hands hadn’t gone away.
‘The first time I remember it being an issue on stage was when I graduated from music college. We were in Sweden, in a church, on tour. I had the music to sight-read, and I was paying with a new group. My hands went and I didn’t have control over my muscles and I couldn’t breathe. It was really terrifying because I hadn’t played with these people before. I got through it, but thought I must be going slightly mad and tried to put it out of my mind.
‘But it kept on happening and was getting worse and worse.
‘Then for orchestral auditions, I couldn’t manage the excerpt, I was practicing and practicing and couldn’t get through it – it was driving me insane. You’ve got to get through these auditions and play these pieces perfectly first time. But if your hands are twitching, you’re stuffed. I was getting very frustrated with myself.
‘I was pushing it and pushing and wouldn’t accept that my hands wouldn’t do what I wanted because I’d spent years practicing – so I was going to practice until I got it right, but in that case that wasn’t possible.
‘If you’ve got a glitch there and you’re pushing it, you’re making it worse.’
When they went to the hospital, Liza was initially told their seizure could have been caused by ‘blowing too hard’ while playing. Then they were told it could be a malignant brain tumour and to ‘prepare for the worst.’
It was in 2008 that Liza saw a specialist at Charing Cross: ‘He said actually, wait a second… he got my full history and did some investigations I ended up doing EEGs with silly hats on my head, and they saw the glitch when I was playing on the scans.
‘It was devastating.
‘I was told not to play – the more seizures you have, the more brain damage you cause. Every single one damages the surrounding brain tissue, and it puts you at higher risk of sudden death in epilepsy – it’s significant risk, which they warn you about when you’re diagnosed. Some people with epilepsy just have a terminal short circuit in their sleep and they don’t wake up.
‘There’s a significant risk of death in epilepsy if you’ve got uncontrolled seizures, so if you’re having stuff that triggers seizures – don’t do it! It’s important to get good control.’
However, Liza refused to let the diagnosis stop them – in fact, they went to medical school to better understand the condition.
‘I still work part-time as a doctor and it’s given me the flexibility to do both things and have a perspective on it from both sides, which is important. I was studying neuroscience and learning about neuroplasticity (the brain’s ability to rework neural networks) and I thought, right I can retrain my brain. I wanted to take part in a study, to do it in a scientific way, but there’s no money for performing arts medicine.’
It was spotting an advert for a recorder player to help folk-collective The Memory Band with a music video that led Liza back to playing.
‘I looked at it and thought: “I’m going to do that”. I hadn’t played for years, it was one of my friends from music college, and I just rocked up. It was all improvised, we just jammed and it went really well. I didn’t have to play anything that triggered my seizures because I was making it all up and it was great. Then they asked if I wanted to join the band, and I ended up touring with them.’
From there Liza joined acclaimed electronic artist James Holden’s band, The Animal Spirits in 2017. ‘We toured for several years. I was now qualified as a doctor, so I was doing both things – two days in the surgery then off to Europe for the rest of the week and back again. It was a bit mad.’
Now as a solo artist, Liza gained funding from the Help Musicians UK Fusion Fund to produce Innervate, a short story and audio-visual installation about their experience of music-triggered epilepsy.
The music has been played on Liza’s own creation – the robo-recorder, which they built after being inspired by musician and experimental instrument-maker Leafcutter John, who had sought Liza’s advice on making ‘woodwind synths’.
‘I took what I had seen at his studio, put a circuit board on my recorder and just made the contact on there. It was that idea of building a very glitchy set-up. The computer listens to the notes I’m playing and that will change the synths, and I’ve got a whole lot of stuff in the computer I can switch on and off, and control the effects. It gives me a whole lot more control.’
The first single from Innervate, Revenge of The Dragoncat, is released this Friday, with the full EP following on February 10.
‘With Revenge of The Dragoncat, that’s the robo-recorder and drums – everything on the track is live. There’s a lot of synths going on, but I’m controlling them all at the same time playing the recorder – that’s what the robo-recroder does.’
Describing playing the robo-recorder, Liza says: ‘It’s a little bit random and it’s a bit like walking on a tightrope – it’s a bit unpredictable. it’s the opposite of classical music where you know exactly what’s going to happen. Things can go wrong, and that’s the point of it, it amplifies that and that’s what I wanted to do with this.’
The robo-recorder is currently on display in the Science and Industry Museum in Manchester as part of an exhibition called Turn it Up: The Power of Music. It was also featured on Radio 6Music DJ Lauren Laverne’s show and put into her show’s hypothetical ‘6 Museum’.
‘I was super-excited about that because when I was growing up people were very down on recorders – “it’s not a proper instrument” – and I think visibility’s really important. I really struggled training when I was growing up, despite the kindness of people like Steve Tanner, it’s really hard in classical music – you need a lot of money. I was just lucky that I had Gwen living opposite to help start me off, otherwise it’s unaffordable for people from a lower-income background.
‘I think it’s really important to say: “I can get on concert hall stage with a professional orchestra and play a plastic recorder, and I don’t need anything else.” I’m choosing to play the recorder.
‘People were really engaging with it when I went up for the museum opening, like: “What’s that? That’s cool!” It’s not just a thing kids bash each other on the head with.
‘I went to college to study clarinet, even though it’s my fourth or fifth instrument – which is mad because I’m much better at the recorder. Getting epilepsy actually made me focus on what I’m good at and what I can do.’
Liza can now recognise the signs of impending trouble when playing music and modify their behaviour accordingly. ‘I do have problems sometimes, it depends on what I’m playing. The thing that’s hard for me is if someone sticks a score in front of me and says: “Play that”. Yeah, I can read, and yeah, I can play it, but sometimes I’m going to have an issue.
‘I have to be able to say: “I’m going to have to miss that bit out”, and I’m very clear with people about that. It’s difficult when you’re working with classical people to say: “I’m going to miss that bit out”, and it might not be the same part every time. It can depend on whether I’ve had enough sleep, what else is going on on stage, what have I just played, and I can feel when it’s starting to happen, but I’ve got to have that flexibility to go: “Okay, I’m going to go off-piste here”. Off course jazzers are used to this sort of thing, which is why I end up playing more in that environment, and in electronic music, and improvisation. It’s funny that I’m now bringing that back into the classical environment and fusing all of those skills.’
FOR THOSE WHO HAVE BEEN UNABLE TO FIND AN EFFECTIVE TREATMENT TO REDUCE SEIZURES, IT IS REASSURING TO KNOW THAT THERE ARE LIFESTYLE CHANGES THAT MAY BE USED WITH NORMAL DRUG TREATMENT TO REDUCE THE NUMBER OF “SEIZURES BY MORE THAN HALF”, ACCORDING TO A NEW STUDY.
Epilepsy, a common and serious neurological disorder, affects more than 3.4 million people in the US, according to CDC. Those living with epilepsy often experience frequent and debilitating seizures.
Despite the availability of many anti-seizure medications, 30% of individuals with epilepsy still have uncontrolled seizures.
The research, which was published in Neurology® today, suggests that patients may benefit from a simple lifestyle change.
For individuals with drug-resistant epilepsy, a combination of medication and a modified Atkins diet high in fat and low in carbohydrates may provide relief from seizures, according to a new study.
This groundbreaking research offers hope for those who have previously struggled to find effective treatment options.
A recent study by the All India Institute of Medical Sciences has found that combining lifestyle changes with traditional drug therapy may significantly reduce the number of seizures experienced by people with drug-resistant epilepsy.
Lead study author, Dr. Manjari Tripathi, said, “it’s encouraging to see that there are lifestyle changes that can be combined with standard drug therapy to reduce the number of seizures,” and their “study found that this combination may reduce the chance of seizures by more than half.”
This promising research offers new hope for those who have struggled to find effective treatment options for their epilepsy.
The modified Atkins diet, a variation of both the Atkins and ketogenic diets, may help to reduce seizures in individuals with drug-resistant epilepsy. This diet includes high-fat, low-carbohydrate options such as soy products, heavy cream, butter and oils, leafy green vegetables, and animal protein including eggs, chicken, fish, and bacon. While the ketogenic diet has previously demonstrated success in seizure reduction, its strict guidelines can make it challenging for some to follow. The modified Atkins diet offers an alternative for those seeking the potential seizure-reducing benefits of the ketogenic diet, with potentially more flexibility in food choices.
In the study, 160 adults and adolescents with epilepsy were given the opportunity to participate in a six-month trial involving either traditional drug therapy alone or a combination of medication and a modified Atkins diet.
All of the participants had struggled with epilepsy for over a decade, experiencing at least 27 seizures per month despite having tried an average of four different antiseizure medications at maximum doses.
As part of the study, participants were asked to track their seizures and meals in order to gauge the effectiveness of the modified Atkins diet. They were provided with food lists, sample menus, and recipes to assist them in following the diet, which restricts carbohydrate intake to 20 grams per day. This is significantly lower than the federal dietary guidelines, which recommend consuming between 225 and 325 grams of carbohydrates daily.
After six months, researchers discovered that 26% of the participants who received both drug therapy and followed the modified Atkins diet experienced a greater than 50% reduction in seizures, compared to only 3% of those who received drug therapy alone. Four individuals in the diet group became seizure-free by the end of the study, while no one in the medication-only group achieved this result. These findings suggest that the modified Atkins diet may be a promising adjunctive treatment for those with epilepsy.
At six months, the research also examined side effects, behavior, and quality of life. Compared to the group that received medication treatment alone, the group that also followed the modified Atkins diet showed improvement in all categories.
Tripathi said that 33% of the people who took part in the study didn’t finish it because they couldn’t handle the diet, didn’t see any benefits, or couldn’t be tracked because of COVID-19. Tripathi, on the other hand, said that the modified Atkins diet was better tolerated than the ketogenic diet.
“While the modified Atkins diet may be an effective treatment in controlling seizures, further research is needed to identify genetic biomarkers and other factors associated with the response to this diet,” Tripathi added. “This may improve patient care by encouraging targeted precision based earlier use of this diet.”
One limitation of the study is that seizure frequency was self-reported or reported by caregivers, which may have resulted in some seizures going unreported.
Source: revyuh.com, American Academy of Neurology, Kuldeep Singh
DENVER METROPOLITAN AREA, COLORADO, UNITED STATES, January 4, 2023 — Katie Sisk created a tried-and-true system called “Show Epilepsy Who’s Boss.” This program provides a new alternative for families and their children to find creative solutions to take back control after feeling uncertain due to seizures and to have the personal power to improve their lives.
This transformative methodology helps reduce the worry, anxiety, and depression that can accompany having a child with challenges. Katie assists them in developing innovative solutions to limit seizure activity so that their child can live independently while shedding years of shame and guilt from all, so they can live a happy and healthy life together.
What clients are saying about Katie’s services:
“When you grow up living with epilepsy it can sometimes be difficult to achieve your dreams. What Katie does so successfully is allow you to share your dreams, hopes, and desires, to help you formulate a strategy that will give you the opportunity to create something beautiful. The only question you have to ask yourself is whether or not you’re ready to stand up to the plate and swing that bat.”
The Three Benefits of Show Epilepsy Who’s Boss are:
* Learn strategies to take back your child’s personal power and help the family thrive together.
* Discover the steps to creating habits and achieving immediate results.
* Get lasting creative solutions to living the life you want with your child and family.
Show Epilepsy Who’s Boss will be available now for parents that want to give their child the skills and resources needed to thrive in life!
Katie Sisk is an award-winning Epilepsy Life Strategist with over 20 years of experience in helping parents. Bringing her own experiences of having epilepsy from infancy to adulthood, in addition to her extensive education. She’s also a certified Transformational Coach and Neuroendcoding Specialist who has helped a plethora of families and their children find creative solutions to take back control after feeling uncertain due to seizures and have the personal power to make their lives better.
Nicola Atkins, 29, who is 4ft 11in tall, has always struggled with her weight, but she managed to lose eight stone with WW (formerly Weight Watchers)
A mother-of-three who was having epileptic seizures up to four times a week and “in pain all the time” has said she now has episodes just twice a month after losing eight stone.
Nicola Atkins, 29, who is 4ft 11in tall, said she was diagnosed with epilepsy in 2012 after being punched by a stranger in Croydon. Her seizures would typically arise from stress or exhaustion.
When she reached her heaviest weight of 15 stone in 2015 after the birth of her first child, she said she would have seizures several times a week and they would put a lot of strain on her body.
Nicola said she was “in pain all the time”, both physically and mentally, and she felt “rubbish”.
But after losing eight stone in 10 months with WW (formerly Weight Watchers), dropping from a size 22 to size 8, she now experiences only around two seizures a month and is “much happier”.
Nicola explained: “I was in town, and these kids ran past this drunk guy and I went to go and help him up and he punched me, and since then I’ve had epilepsy.
“I’d probably have around three or four (seizures) in a week but sometimes I’d have more than one in that day.
“It was very frustrating, especially when you’ve got a new baby.
“It was a lot (to deal with), mentally and physically, but now that I’ve lost loads of weight, my body doesn’t hurt anywhere near as much after having a seizure.”
She added: “It has impacted my life so much. I’m so much happier, I’m better, (and) I feel healthier.”
Nicola said she has always struggled with her weight, but she reached her heaviest at 15 stone following the birth of her first son, Luca, now seven, in 2015.
She explained that she was experiencing postnatal depression and “didn’t want to go anywhere”.
She said she “didn’t feel good enough” and her lack of confidence meant she stopped doing the hobbies she loved, including karaoke.
She would stay at home and “eat anything she could find”, including sweets and junk food, as it “seemed to make (her) happy”.
But in reality she said she was “miserable” and this led to her starting her WW journey in 2015.
“I felt a lot less confident when I was bigger,” Nicola explained.
“People would point it out to me and just not be very nice about it, and I thought it was time for me to do something about this because I’m still going to be big if I keep complaining about it.
“(Complaining is) not going to make me lose weight, so I started going to the meetings.”
Nicola, who lives in Crawley, West Sussex, with her husband, Chris, 33, and her three children, Luca, seven, Avery, five, and Arlo, one, started going to WW meetings in 2015.
She was based in Croydon at the time and said everyone was “so supportive”.
She would go for weekly weigh-ins and would use the WW app for recipes and guidance. She would also follow The Points system, which takes a food’s specific nutritional value and turns it into a single number.
Nicola explained that being around other people who had the same goal helped enormously, especially because there was no judgment from anyone.
Nicola said: “At the Weight Watchers meetings, everybody is literally in the same boat – some people are just starting, some people are just keeping the weight off, and some people are maintaining.
“You’ve also got people who are really struggling to lose weight, but they still go to the meetings anyway. It’s such a nice environment … and the coaches really lift you up.”
But it has not always been easy for Nicola.
She remembered one week during her weight loss journey where she had not lost any weight.
She said she felt “really disappointed” and “upset” as she had “tried really hard”, but her WW coaches encouraged her to carry on and told her not to lose hope.
“They said, ‘don’t worry, it’s a new week. You’re doing fine as you are, and you haven’t put anything on’,” Nicola said.
“It was nice and, after I got smaller, I still went to the meetings.
“It was really nice to be able to share my story with other people and give them confidence and a boost to follow the app as much as they can and keep going.”
After 10 months, Nicola lost a total of eight stone, dropping from a size 22 to a size 8 through dieting alone.
She said she felt more confident and started socialising with her friends again. She even started going back to karaoke – a hobby she “absolutely love(s)”.
“I love singing. I did Performing Arts at college, but I stopped going (to karaoke),” she said.
“As soon as I started losing weight and felt more confident, I started going out with my friends again and going to sing and that was a big thing for me.
“When I first started going back out, I thought, ‘oh no, people are looking at me’, but they were looking at me for a different reason. A couple of times they didn’t even recognise me.”
Nicola remembers another occasion when even her best friend did not recognise her after her weight loss transformation.
“My best friend, she lived in Weston-Super-Mare for a long time, so I never really saw her,” she said.
“She came down to see me and the baby and she walked right past me. I was like, ‘Zoe, I’m over here!’ The last time that she’d seen me before that, I was really quite big.
“It’s nice to be recognised, but in a way, it’s nice not to be recognised as it just means that I’ve done well, and I’ve changed the way that I look in a good way.”
Nicola said her weight loss journey has not been easy, but she never gave up and she wants to help others who may be struggling.
She continues to use the WW app as she gained weight after the birth of her third child in 2021, but she said the programme has changed her and her family’s life.
They have a healthier lifestyle – they go outdoors more, eat more vegetables, and now cook their meals from scratch. She also has fewer seizures.
Nicola said making small, healthier food swaps, such as using grated cauliflower instead of rice, has made a big difference.
Nicola wants to encourage others who want to lose weight to “never give up” and to “stay positive”.
She said: “I know that one week, if it’s not what you hoped for, it can be a bit of a downer, but if you’re positive and you stay focused, you’re more likely to get the results that you want.
“It’s not a quick fix, it does take a lot of hard work.”
She added: “What I would always say to the kids is ‘there’s no such thing as can’t’. You have to think, is it that you can’t do it, or you don’t really want to.
“If it’s something you really want, you’ll achieve it, so don’t give up.”
They can be subtle and sometimes there are no early signs
Epilepsy causes recurrent seizures, and most of the time, there are no recognizable signs of epilepsy before the first seizure occurs. However, for some people, there may be some early signs that epilepsy will develop before seizures begin.
Additionally, some types of seizures are somewhat subtle and are not always recognized as seizures. Therefore, some people might not realize that they have epilepsy or might not seek medical attention until seizures recur or become more severe.
This article will discuss the early signs of epilepsy in babies, children, and adults. It will also cover the warning signs of a seizure, causes of epilepsy, and what to do during a seizure.
Early Signs of Epilepsy
Some people have epilepsy as part of another neurological condition, such as a developmental disorder or dementia. These conditions cause problems with learning, attention, memory, vision, or physical movements.
For adults, children, and babies, seizures may be obvious and can include shaking and stiffening of one or both sides of the body. However, sometimes they can be subtle and may cause changes such as a lack of attention, staring into space, eye fluttering, blinking, or a lack of responsiveness.
When seizures are subtle, sometimes people may not notice that they have epilepsy until seizures that involve substantial changes in consciousness or physical movements occur. The subtle events may begin to have a serious impact or occur frequently.
Adults
Adults who develop epilepsy may begin to have seizures as a result of brain damage from head trauma, a brain tumor, or a stroke. In these situations, neurological symptoms can occur because of the underlying condition.
These problems may include weakness or difficulty controlling one side of the body, coordination problems, personality changes, memory deficits, or thinking problems.
Children
Children may develop epilepsy due to a neurodevelopmental condition that they are born with. Children with developmental conditions may also have problems such as delayed walking, difficulty with learning, vision problems, attention problems, or behavioral difficulties.
Babies
Babies may develop seizures due to a severe brain injury that occurred during development that may sometimes be related to a genetic condition. Sometimes associated growth problems can be detected even before a baby is born.
Some babies who have epilepsy from birth have problems with muscle tone and muscle control, which can cause stiff muscles or very floppy muscles, and this could be part of a neurological syndrome that includes epilepsy. Additionally, babies who have epilepsy may have abnormalities in their sleep patterns.
Warnings of a Seizure
Some people have symptoms that can occur prior to a seizure or during the early part of a seizure, and the symptoms may be considered a warning sign if they are recognizable. This may be called the prodrome, and some people also refer to an aura as a seizure warning.
Prodrome Stage
A prodrome is a feeling people have prior to experiencing a seizure. This may include unusual sensations or emotions, or a sense of extreme fatigue. Many times, people who have epilepsy will begin to recognize a specific recurrent prodrome. But a person who has a prodrome prior to their seizures may not always experience it before a seizure.
Aura Stage
An aura sometimes occurs at the beginning of a seizure. Neurologists consider an aura to be a focal seizure, which means a seizure that only involves one area of the brain. Aura symptoms can include unusual sensations or feelings or small movements of one part of the body. These generally last for several seconds at a time.
Sometimes an aura can develop into a more widespread seizure involving larger regions or both sides of the brain and can include involuntary movements of the body.
Epilepsy Causes
Epilepsy is a condition in which a person has recurrent seizures or a predisposition to having recurrent seizures. This condition occurs because of abnormal and uncontrolled electrical activity in the brain.
There are many causes of epilepsy, and they all involve some type of variation in the structure of the brain that predisposes you to the electrical discharges that cause a seizure.
Risk factors include:
Genetic epilepsy syndromes (can be inherited or develop without a hereditary pattern)
Low oxygen or another severe stress to the fetus during fetal development
Brain injury due to head trauma
Brain damage from a stroke
Toxins, such as alcohol, causing metabolic damage to the brain
Health problems, such as heart disease or cancer
Psychiatric conditions
Alzheimer’s disease (a progressive dementia)
Seizures can also be idiopathic, meaning without an identifiable cause or risk factor.
What to Do During a Seizure
If you witness someone having a seizure, the most important thing to do is to keep them safe. You should not try to move them or put anything in their mouth. However, if possible, keep them away from anything sharp, from water that could cause drowning, or from a place where they could fall.
When to Contact Emergency Services During a Seizure
Call for emergency help in the following circumstances:
A first seizure (also call if you don’t know the person or their medical history, as it may be a first seizure)
Seizure lasting for longer than 30 seconds
Seizure clusters, which are recurrent seizures very quickly back to back
A person is pregnant and having a seizure
An injury during or after a seizure
A person does not quickly regain consciousness after a seizure
When to Seek Care
You should get prompt medical attention if you are having episodes that could be seizures.
This includes:
Spacing out (the person looks awake but is not responsive to something like a tap on the shoulder or a verbal cue)
Having episodes of not remembering what happened
Unexplained injuries or falls
Involuntary shaking or stiffening of any part of your body
Diminished level of awareness
Changes in personality
Weakness or numbness of any part of your body
Vision changes
The symptoms could indicate a seizure or another neurological problem that would need to be evaluated.
Summary
Some people may have symptoms before being diagnosed with epilepsy. The symptoms can occur if the seizures are subtle. Additionally, other symptoms that may occur before epilepsy involve childhood motor or learning difficulties. Adults may have problems related to a stroke or head trauma experienced before epilepsy.
Many people who have epilepsy also experience pre-seizure symptoms, which are described as a prodrome, and some people have an aura, which is a brief focal seizure prior to having a more noticeable seizure.
A Word From Verywell
If you have symptoms that seem unusual and involve your physical movements and level of consciousness, it is possible that you may have a neurological problem.
Most people do not experience signs or symptoms of epilepsy before the first seizure, but if you are having any symptoms at all, it is very important that you get medical attention. Early diagnosis and treatment can lead to better overall outcomes.
FREQUENTLY ASKED QUESTIONS
How is epilepsy diagnosed?
Epilepsy is a clinical diagnosis that is based on a medical history. Sometimes diagnostic tests can be helpful in determining if someone is having seizures. Tests may include brain imaging studies and an electroencephalogram (EEG). However, sometimes test results can be normal even if a person has epilepsy.
What are the after effects of a seizure?
Most people feel very tired and groggy after a seizure and often do not recall the event. Many people feel confused or disoriented after having a seizure.
Some people have weakness in one part of the body after a seizure. The weakness corresponds to the area of the brain where the seizure started, if it was a focal seizure. These post-seizure symptoms can last from minutes to days.
Can you suddenly develop epilepsy?
Yes, it is possible to suddenly develop epilepsy. Sometimes it occurs with a known cause, such as a stroke or head trauma, and sometimes it is idiopathic (without a known cause).
Green, whose real name is Stephen Manderson, said he fell “face down” after suffering a grand mal seizure while on his own at home.
Rapper Professor Green has revealed he nearly died after suffering a seizure.
Green, whose real name is Stephen Manderson, said he fell “face down” into steel and concrete after suffering a grand mal seizure while on his own at home in April.
In a post on social media, the “I Need You Tonight” rapper revealed he convulsed for eight minutes, during which he “repeatedly” hit his head and face.
Sharing details about the incident on Instagram, the 39-year-old performer wrote: “I had a grand mal seizure while home alone, fell face down into steel and concrete and convulsed for 8 minutes, repeatedly hitting my head and face – I’ve never watched the CCTV.
“The bruising internally was more the issue and I’ve been clawing my way back ever since.
“It was caused by a culmination of things, but largely I’d not been taking care of myself, the opposite in fact.
“I nearly lost my family, my family then nearly lost me.”
He also urged others to “deal with” their health, adding: “If you don’t, it’ll deal with you.”
Manderson, who is also an advocate for mental health, previously revealed he had suffered a seizure in 2019.
The London-born performer had to cancel his UK tour that year after fracturing three vertebrae in his neck after suffering the medical episode. He then suffered two further seizures.
Posting about the incident at the time, he said: “Just after I sent this pic I sent to someone to say how ready for tour I was, I had the first seizure I’ve ever had which led to me falling without hands to soften the fall and fractured my neck in doing so.
“After I got to the hospital I had a second seizure with again no obvious cause.
“There’s one theory – I’ve run myself into the ground doing way too much, over-stretching myself as per usual and it’s finally caught up on me.
“Seems quite likely. I’m gonna use this time to implement all the self-care I encourage others to [p]ut into practice – and it’s going to stay in practice as there’s nothing like nearly breaking your neck to put things into perspective.
“Rest, studio, books, and efforts into building what might even be a relationship… A healthy one. Not one based on toxicity. Crazy, I know.”
Green, who shot to fame with his debut album Alive Till I’m Dead in 2010, welcomed his first child, a son, with actress and model Karima McAdams in 2021.
WHAT IS A GRAND MAL SEIZURE?
Also known as a tonic-clonic seizure, a grand mal is what most people think of as an epileptic fit.
Someone suffering from a grand mal will lose consciousness and go stiff, often falling to the floor, in what is known as the tonic stage of the seizure.
They will then enter the clonic stage, in which they will start to convulse.
These type of seizures can be dangerous for those who suffer them, as the initial fall can result in serious injury, while the convulsions can also cause further damage.
For people with epilepsy – a condition that causes frequent seizures – these fits can appear to happen at random.
But they can be triggered by a number of factors, including stress, a lack of sleep, alcohol and some medicinal and recreational drugs.
Though fits are often associated with epilepsy, someone without the condition can also suffer a grand mal seizure.
Epilepsy is a chronic neurological disorder that affects approximately 50 million people worldwide. It is characterized by recurrent seizures, which are caused by abnormal electrical activity in the brain. Seizures can vary in severity and can range from brief lapses in awareness or muscle spasms to full-blown seizures that involve convulsions and loss of consciousness.
Epilepsy can occur at any age, but it is most common in young children and older adults. In many cases, the cause of epilepsy is unknown, but it can be triggered by various factors such as head injuries, brain infections, or genetic predisposition.
Despite the fact that epilepsy is a common and treatable condition, it is often misunderstood and stigmatized. People with epilepsy may face discrimination and difficulties in their personal and professional lives, including obtaining employment or insurance coverage. This can lead to social isolation and a negative impact on mental health.
There are several treatment options available for people with epilepsy, including medications, lifestyle changes, and surgery. Medications are the most common treatment for epilepsy and are usually effective in controlling seizures. However, these medications can also have side effects, and finding the right medication and dosage can be a process of trial and error.
Lifestyle changes, such as getting enough sleep, avoiding triggers such as alcohol and certain medications, and reducing stress, can also help control seizures. In some cases, surgery may be an option to remove the part of the brain that is causing seizures.
In recent years, researchers have made significant strides in understanding the causes of epilepsy and developing new treatments. One promising new treatment is the use of medical marijuana to control seizures. While more research is needed to fully understand the effectiveness of medical marijuana in treating epilepsy, early studies have shown promising results.
It is important for society to continue to educate ourselves about epilepsy and support those living with the condition. By raising awareness and promoting understanding, we can work toward a future where people with epilepsy are able to live full and fulfilling lives. This can be achieved through increased funding for research and better access to treatment, as well as promoting acceptance and inclusion for people with epilepsy in our communities.
If you or someone you know is living with epilepsy, it is important to seek out support and resources. There are many organizations and support groups available to help individuals and families affected by epilepsy, and speaking with a health care professional can provide helpful information and guidance. Together, we can work toward a world where epilepsy is no longer misunderstood and stigmatized, but rather a condition that is understood, accepted, and effectively treated.
In the season of longer, dark nights and days that seem gray, many people report heightened feelings of moodiness or depression.
People spend more time indoors in artificial light and less time outdoors when temperatures drop. Late fall and winter are also associated with multiple sugar- and alcohol-filled holidays, starting with Halloween and continuing through Valentine’s Day — and research suggests that regularly consuming both can increase feelings of sadness.
About one in 20 American adults will develop seasonal affective disorder (SAD) — a type of depression that tends to start in the late fall and continue into the winter. Many others just feel a sense of blah vibes and a lack of motivation.
According to experts and research studies, there are several ways people can avoid feeling sad or depressed this winter.
A ketogenic diet is a high-fat, moderate-protein, very low-carb way of eating (usually less than 20 grams per day for first-timers) that has been around for over 100 years
Avoid carbohydrate-rich foods
A low-carb, ketogenic diet (KD) can reverse epilepsy, a neurological disorder, and type 2 diabetes. A study in May assessed the potential therapeutic efficacy of a ketogenic diet on a range of brain disorders, including depression, Alzheimer’s, Parkinson’s and migraines.
A ketogenic diet is a high-fat, moderate-protein, very low-carb way of eating (usually less than 20 grams per day for first-timers) that has been around for over 100 years.
“I’ve personally been on a low-carb, keto diet for over 20 years for my own health, and have used it with patients for over 15 years, primarily for weight loss,” says Chris Palmer, an assistant professor of psychiatry at Harvard Medical School and the chief of the Department of Postgraduate and Continuing Education at McLean Hospital, in a statement.
“I’ve found that the medical version of the ketogenic diet has antipsychotic effects and mood benefits in patients with chronic mental illness, so I’m pioneering the clinical use of the ketogenic diet in psychiatry.”
The authors state in the study published in Nutrients: ‘The review of the scientific literature shows that KD can influence not only the progression of neurological disorders, but also the course and outcome of their treatment’,
The researchers claim their review provides evidence that the ketogenic diet may provide therapeutic benefits in patients with neurological problems related to neuroinflammation or problems with brain energy metabolism.
When a person is in ketosis, they produce various ketone bodies that become alternative sources of energy for their brain and other organs.
Those include beta-hydroxybutyrate, which can increase the secretion of something called BDNF (brain-derived neurotropic factor), which has neuroprotective and neuroregenerative effects that improve a person’s mood.
“The effectiveness of KD has been proven in epilepsy and in other neurological diseases, such as depression, migraine or neurodegenerative diseases such as AD and PD,” the study concludes. “KD should also be considered as an adjuvant therapeutic option in other neurological conditions.”
“The effectiveness of KD has been proven in epilepsy and in other neurological diseases, such as depression, migraine or neurodegenerative diseases such as AD and PD,” the study concludes. ‘KD should also be considered as an adjuvant therapeutic option in other neurological disorders’
Get daily morning and afternoon sunlight
The sun is a free, natural antidepressant whose positive effects have also been known for a long time.
In 2017, Jeffrey Hall, Michael Robash, and Michael Young won the Nobel Prize in Physiology or Medicine for their discoveries of molecular mechanisms that regulate circadian rhythm for everyone as on Earth.
Think of it this way: You have a clock in your head called the suprachiasmatic nucleus that directs your day-to-day behavior and how your body functions in relation to the sun in the sky.
Instead of spending all your time indoors staring at screens (computers, TVs, and smartphones), experts say it’s best to get as much sunlight as possible — even on cloudy or gloomy days.
“Your body is meant to be in the sun, and exposure to sunlight throughout the day is crucial to your well-being. In addition to producing vitamin D, an essential ingredient for overall health, sunlight also regulates your circadian rhythm by regulating the levels of serotonin and melatonin produced by your brain,” says Dr. Courtney Hunt, a nutrigenetics practitioner who studies how nutrition in the form of food and supplements affects a person’s genes and vice versa.
“People who don’t get enough sunlight have altered immune defense mechanisms that predispose them to excessive inflammation, which can lead to autoimmune diseases,” she states on her website.
Morning sunlight from sunrise tells your body to store melatonin for the day and produce cortisol and other hormones like serotonin and dopamine that you need to function. It also sets you up for a good night’s sleep the next night.
“People who don’t get enough sunlight have altered immune defense mechanisms that predispose them to excessive inflammation, which can lead to autoimmune diseases,” Dr. Courtney Hunt on her website
Afternoon light that contains UV rays helps you produce vitamin D through the synthesis of LDL cholesterol in your body. Vitamin D has many other positive effects, including strengthening your immune system and supporting healthy serotonin levels (lower serotonin levels are associated with feeling sluggish and in a bad mood).
If you need an extra boost beyond what’s available outside, experts recommend a red light therapy device or a bright light therapy box. They can both have mood and sleep-boosting benefits.
Stay active with weight lifting, HIIT and walking
While the mood-boosting effects of exercise are well known, that doesn’t mean it’s easy to stay consistent in the winter.
Physical activity is one of the best ways to stay energized throughout the day without the aid of caffeine or sugar, according to the CDC.
Researchers at the Blavatnik Institute at Harvard Medical School analyzed the cellular effects of both fasting and vigorous exercise for a February 2019 study.
Metabolic syndrome can predispose a person to neuroinflammation that eventually causes illnesses such as depression. One way to combat metabolic syndrome is through regular, rigorous exercise such as weightlifting, running, or high-intensity interval training.
Both metabolic interventions were independently shown to improve the internal cellular removal of so-called waste proteins that can accumulate and lead to neurodegenerative diseases such as Alzheimer’s and Parkinson’s.
It seems safe to assume that they would also have a positive effect on one’s mental well-being.
According to the CDC, “Regular exercise can reduce your risk of developing type 2 diabetes and metabolic syndrome. Metabolic syndrome is a combination of too much fat around the waist, high blood pressure, low high-density lipoprotein (HDL) cholesterol, high triglycerides or high blood sugar.’
Metabolic syndrome can predispose a person to neuroinflammation that eventually causes illnesses such as depression.
People with epilepsy are now able to help manage their condition, while reducing waiting lists for others at the same time.
An open access service has been introduced, allowing them the option to take charge of their care by contacting a dedicated phone line when they need to.
Patients can chat directly with epilepsy specialist nurses, who run the service, about their concerns or queries about everything relating to their epilepsy.
This includes medication support, advice around planning a pregnancy and day-to-day risk management to keep them safe.
Pictured: Consultant neurologist Professor Rob Powell, epilepsy specialist nurses Jenny Edwards and Sharon Brown, consultant neurologist Dr Owen Pickrell and pharmacist Charles Henry-Her.
By choosing to get in touch when they require a helping hand, it provides consultant neurologists, and other clinical staff, more time to see new patients and tackle waiting times.
Sharon Brown, epilepsy specialist nurse, said: “Previously there was only a telephone line people could ring between 8am and 9am, which the epilepsy nurses managed.
“If they couldn’t get through then they had to try again the next day so getting through was quite difficult.
“We thought we’d try setting up an answerphone so we could ring these patients back so they didn’t have to wait for an appointment.
“Around two thirds of people with epilepsy are well-controlled on their medicines and don’t necessarily need to be seen every six months or so, which was standard practice.”
Staff identified people who would be appropriate for the open access service and sent letters to them to ask if they would be comfortable with the self-management approach.
If not, they were able to remain on the list for an appointment as normal.
“That narrowed it down quite a lot because we were able to take quite a lot of people off the waiting lists,” Sharon added.
“It meant consultants would be able to see patients they had to see and they were able to see them quicker.
“We have got close links with the consultants and we also deal with GPs so we can help make changes quickly.
“The nature of epilepsy is unpredictable. This way, we can speak to people when they need help and support.”
Theresa Hicks, from Swansea, was diagnosed with epilepsy around 10 years ago.
The 37-year-old said being able to get in touch when needed helped her to manage her condition.
She said: “When I was first diagnosed, it wasn’t too bad and I was just on medication.
“The last couple of years it’s been getting quite bad. There was one occasion where I was picking my son up from school and I had a fit on the way.
“I was put forward for the open access service and everything has been fine.
“It saves me going back and forth to the hospital for appointments.
“If I call them about something, they help you straight away. It is definitely easier.”
Jenny Edwards, epilepsy specialist nurse, works alongside Sharon and between them they receive between 40 and 50 calls linked to the open access service a week.
“It’s initially a triaging service,” Jenny said.
“Sometimes people leave us a long message with lots of information so we know exactly what the problem is and other times they just leave their contact details.
“These patients need a relatively fast response. Seizures don’t wait months for a consultant appointment.
“This has all been designed with them at the heart of it. We are just trying to serve them better.”
The general response from patients using the ‘see-on-symptom’ approach has been very positive so far.
Luke Shrimpton (pictured), epilepsy co-ordinator, was added to the team in December 2020. His experience in achieving shorter waiting times for patients has been invaluable in developing the service.
In January 2020, there were 1,346 patients waiting for a follow-up appointment after being diagnosed with epilepsy.
Two years later, in January 2022, it had dropped to 330 following the introduction of the open access service.
Sharon added: “People are so much happier that they can just ring when there’s a problem.
“A lot of them prefer telephone conversations as they can’t drive due to their seizures so it means they haven’t got to come to the hospital.
“It’s not all about arranging appointments with a consultant when we call people back. If they’re on medication already and they aren’t on the maximum dose, then we would have a chat with them over the phone about their seizures and if there are any triggers.
“If there are no obvious triggers then we can talk to their doctor and ask if their medication can be increased.
“We are able to provide a lot of the support over the phone ourselves.”
The support the nurses provide extends far wider than monitoring medication dosages, as they can even offer psychological and preconception counselling too.
Jenny said: “It could be they want some preconception counselling around any concerns they may have about becoming pregnant, or they could be struggling in general.
“There could be a lack of understanding as to why they’ve been put on a certain medication.
“It’s an opportunity for us to answer all of those questions and support people.”
IOWA CITY — At age 12, on the cusp of becoming a teen with a cellphone and ambitions of an increasingly independent existence full of friends, freedom and PG-13 movies, Alex Petrucci one morning climbed into the back seat of her family vehicle and found herself transported to a new reality instead of going to school.
“I woke up on the floor of the garage and paramedics were taking me away,” Petrucci, a now 29-year-old University of Iowa doctoral student, told The Gazette about the morning she had her first seizure while in middle school in Austin, Texas.
“Imagine how horrifying that is to be on the cusp of feeling like you’re an ‘adult’ and you can handle yourself to suddenly developing a chronic illness that makes everybody hover,” she said.
Tests revealed Petrucci had developed rolandic epilepsy — a benign pediatric disorder she managed for years with medicine before eventually outgrowing it. At least for a while, though, it hindered her.
“I couldn’t even use the bathroom alone, teachers would have another student follow me to the restroom,” she said, recalling being afraid to get her driver’s license until age 18. “So I was later than everybody else because I was scared of what would happen.”
Fast forward a decade, and what once confined Petrucci now compels her as a fall 2022 UI graduate with a newly-minted Ph.D. in neuroscience with plans to continue her epilepsy research as a postdoctoral student at the University of Utah.
She has “single-handedly advanced the use of several powerful techniques in our lab,” according to her mentor, Gordon Buchanan, a UI epilepsy professor and associate professor of neurology. “She is well on her way to making research advances to positively affect the lives of patients with epilepsy.”
Finding her path
Petrucci’s passion evolved out of her pursuit six years ago for connection in an unfamiliar state she’d never visited before applying to UI’s neuroscience program. Once in Iowa City, still unsure of what specifically she would study, Petrucci began volunteering with the local Epilepsy Foundation chapter and found herself at a conference where Buchanan was speaking.
He was presenting on “sudden unexpected death in epilepsy” — a subject that both fascinated and frightened her — and how UI researchers were studying the condition using animal models. As interested as Petrucci was, she needed prodding to jump in his path and introduce herself that day.
Tests revealed Petrucci had developed rolandic epilepsy — a benign pediatric disorder she managed for years with medicine before eventually outgrowing it. At least for a while, though, it hindered her.
“I couldn’t even use the bathroom alone, teachers would have another student follow me to the restroom,” she said, recalling being afraid to get her driver’s license until age 18. “So I was later than everybody else because I was scared of what would happen.”
Fast forward a decade, and what once confined Petrucci now compels her as a fall 2022 UI graduate with a newly-minted Ph.D. in neuroscience with plans to continue her epilepsy research as a postdoctoral student at the University of Utah.
She has “single-handedly advanced the use of several powerful techniques in our lab,” according to her mentor, Gordon Buchanan, a UI epilepsy professor and associate professor of neurology. “She is well on her way to making research advances to positively affect the lives of patients with epilepsy.”
Finding her path
Petrucci’s passion evolved out of her pursuit six years ago for connection in an unfamiliar state she’d never visited before applying to UI’s neuroscience program. Once in Iowa City, still unsure of what specifically she would study, Petrucci began volunteering with the local Epilepsy Foundation chapter and found herself at a conference where Buchanan was speaking.
He was presenting on “sudden unexpected death in epilepsy” — a subject that both fascinated and frightened her — and how UI researchers were studying the condition using animal models. As interested as Petrucci was, she needed prodding to jump in his path and introduce herself that day.
