May 08, 2023 | Cannabis Derived Medicine, Epilepsy, Seizures, Sleep deprivation
Medical craft cannabis alludes to a particular sort of pot that is developed and handled explicitly for therapeutic purposes. High-quality, potent strains tailored to specific medical conditions are produced using advanced cultivation techniques in this type of cannabis. Medical craft cannabis, in contrast to recreational cannabis, is prescribed by licensed healthcare professionals and is only used for medicinal purposes. WeGROW Craft Cannabisis acquiring fame among patients as a protected and viable option in contrast to customary meds for overseeing side effects related with different ailments. This is because medical craft cannabis contains certain chemical compounds, like CBD and THC that work with the system in the body to help people feel better.
Additionally, medical craft cannabis is frequently tailored to each patient’s specific requirements, enabling individualized treatment plans. In general, medical craft cannabis is a promising new development in medicine because it provides patients with a natural and non-toxic alternative to conventional medications for a wide range of medical conditions.
Advantages of Medical Craft Cannabis for Different Ailments
Medical craft cannabis has shown promise for treating the following conditions:
By reducing inflammation and modifying pain signals in the brain and nervous system, medical craft cannabis may aid in the treatment of chronic pain.
- Nervousness and melancholy:
It has been demonstrated that the cannabidiol (CBD) found in medical-grade cannabis has anxiolytic and antidepressant effects, which may assist in reducing symptoms of depression and anxiety.
Clinical specialty weed containing elevated degrees of CBD has been displayed to decrease seizure recurrence and work on personal satisfaction for certain patients with epilepsy.
- Queasiness and regurgitating:
The antiemetic properties of the THC found in medical marijuana may help alleviate nausea and vomiting caused by chemotherapy and other medical treatments.
Clinical art pot might assist with further developing rest quality and diminish rest unsettling influences for patients with sleep deprivation and other rest problems.
Spasticity, pain, and dysfunction in the bladder are some of the symptoms of multiple sclerosis that medical cannabis may help alleviate.
How to Use Medical Cannabis for Medical Purposes
The type and strength of the cannabis product, the patient’s individual response to the treatment, and the patient’s medical condition can all influence the dosage and administration of medical craft cannabis. It is essential to collaborate closely with a licensed medical professional when determining the best dosage and method of administration for your particular requirements.
Here are a few common principles for dosing and organization of clinical art weed:
- Begin low and go sluggish:
When using medical craft cannabis for the first time, it’s important to start with a low dose and increase it as needed. This can help the patient determine the best dosage for their needs and help them avoid potential side effects.
- Different organization techniques:
Clinical art weed can be consumed in various ways, including smoking, disintegrating, edibles, colors, oils, and topical. The patient’s healthcare provider can assist in determining which administration method is most suitable for their particular requirements.
The effects of medical craft cannabis on patients’ symptoms should be closely monitored, and dosage and administration should be adjusted as necessary. It’s critical to keep a log of doses, organization techniques, and side effect alleviation to assist with recognizing the ideal treatment plan.
The Scientific Basis for Medical Cannabis
Understanding the plant’s chemical compounds and how they interact with the system (ECS) is essential to the science behind medical craft cannabis. Delta-9-tetrahydrocannabinol (THC) and (CBD) are the two most well-known substances found in cannabis. While CBD is non-psychoactive and has been found to have potential therapeutic effects, THC is responsible for the psychoactive effects that are frequently associated with cannabis. The ECS is a perplexing arrangement of receptors and synapses that are engaged with controlling different physiological capabilities like hunger, state of mind, rest, and torment discernment.
Bind to these receptors and aid in regulating these functions, are produced by the body itself. THC and CBD from marijuana likewise tie to these receptors and can tweak their action, prompting a great many restorative impacts. Medical craft cannabis is the subject of ongoing scientific investigation into its potential to treat a wide range of medical conditions, including nausea, anxiety, epilepsy, and chronic pain. The plant and its chemical compounds are still being studied by researchers to learn more about how they function and can be used to treat a variety of medical conditions.
The growing field of research and treatment options for a wide range of medical conditions is represented by medical craft cannabis. Medical cannabis has the potential to improve patient outcomes and quality of life as scientific knowledge of the plant and its chemical compounds continues to grow.
More precise dosing and administration methods, as well as a better understanding of the specific strains and cultivation methods that produce the most potent therapeutic effects, are likely to be part of the future of medical craft cannabis. Additionally, new medical applications for medical craft cannabis and its chemical compounds are likely to emerge from ongoing research.
May 07, 2023 | EEG, Epilepsy, Neurology, Research, Seizures, Technology
Epileptic patients in the Seizure Monitoring Unit (SMU) at the Foothills Medical Centre regularly spend days in isolation as doctors monitor their symptoms, but volunteers are stepping up to provide companionship and critical support when it’s needed most.
The SMU is a clinical space with four treatment beds where the brain waves of patients are constantly monitored and they’re induced into having a seizure to find out more information about their condition.
“The days are long sitting in a unit, waiting to have a seizure. I was in a dark room by myself thinking about maybe having brain surgery, so my mind went to some dark places,” said Derek Payne.
“Normally, when you have epilepsy, you’re hoping not to have a seizure, so sitting in a bed hoping to have one is strange. Hoping that the results of that seizure come back and that you can be one of the lucky ones and be a candidate for brain surgery is even stranger.”
Payne was diagnosed with epilepsy in 1999 and had what he called ‘minor episodes’ for the first decade, but his symptoms soon progressed to the point where he was having several seizures where he lost consciousness or awareness.
He was admitted to the SMU for two weeks to determine if he was a candidate for brain surgery and underwent a successful operation in 2015.
Just one day before Payne’s operation he had six seizures, but following his procedure he hasn’t had one since.
His life-changing experiences have now inspired him to want to give back to other patients. Payne is an active member of the Epilepsy Association of Calgary and he regularly makes weekly visits to the SMU as a volunteer to offer emotional support.
“I remember I had lots of people visiting when I was in the SMU, but I never had an opportunity to talk to someone that actually knew what I was going through,” said Payne.
“So now hearing about how these patients are feeling and how their experiences were very similar to mine just motivated me even more to want to come back.”
‘IT WAS EXTREMELY INSPIRING’: SMU PATIENT
Cody Wilde recently spent 30 days in the SMU late last year and had just under 20 seizures during that time while doctors monitored his condition.
It was an incredibly lonely experience, but the support of volunteers is what gave him that extra boost he needed.
“There aren’t a lot of people that really understand what’s going on from your perspective as someone that has epilepsy. So having people like Derek there, it was extremely inspiring,” said Wilde.
Wilde is now taking medications for his epilepsy condition and has officially returned to work, but he says he couldn’t have done it without the support of volunteers.
He was especially inspired by Linda McClure, a volunteer who was also a former patient at the SMU.
“Linda has one of the largest hearts that I’ve ever met, she would come by every other day and bring a smile to my face,” Wilde said.
I can’t say enough about how much I appreciated her and how much that mitigated my loneliness during that time.”
‘BATTLES OF THE MIND’
McClure is another very impactful volunteer now at the SMU, but she wasn’t diagnosed with epilepsy until she was 49.
She had an unsuccessful brain surgery in 2016 and was once taking six different medications as doctors continued to monitor her symptoms.
Now down to two medications, McClure has become a beacon of hope for those suffering from seizures and wrote a book called ‘Battles of the Mind’ where she details her incredible journey.
“There’s a lot of patients coming from out of province that don’t have family or friends here. I get that, been there, done that. It’s just being able to go in there and be that empathetic person who actually does understand what they’re going through,” she said.
“I think for me, the fact that I have had pretty much every procedure that’s available, done to this head, I can speak to a lot of different aspects of the treatments. It’s a good feeling to give back and be there for people.”
That emotional impact is particularly felt by current patients like Melanie Ormond who has been admitted to the SMU several times since 1997.
Having undergone brain surgeries and several testing procedures she sometimes finds it difficult to have hope, but she no longer feels alone.
“Derek and Linda both came in the other day, they introduced themselves and we shared stories,” said Ormond.
“We were talking about how nice this would have been before our surgeries to talk to somebody who had gone through it. It’s about quality of life, these seizures may not go away forever, but we can still focus on functioning in a way that you’re living a fulfilled life.”
Source: iheartradio.ca, Mark Villani
May 06, 2023 | Epilepsy, Human Interest Epilepsy, Neurology, Seizures
Evan Molloy was having 40 seizures per week but will soon take on some of the world’s best athletes at the 2023 IBSA World Games
An albino judo athlete from Wiltshire who was diagnosed with epilepsy – dashing his dreams of competing in the Tokyo Paralympics – is now seizure free and preparing for the world’s largest sporting event for blind and partially sighted athletes. The condition caused Evan Molloy him to have up to 40 seizures per week in his teenage years.
The 24-year-old from Devizes was born with ocular albinism, which causes visual impairments. He has had glasses ever since he can remember, despite “hating wearing them” as a child.
Evan was diagnosed with epilepsy at the age of four – a condition which affects the brain and causes frequent seizures. Between the ages of 17 and 20, he was having up to 40 seizures per week, which had a “dominating” effect on his life.
He said he became an insomniac because every time he slept, he had a seizure. He would often wake up after regaining consciousness from a seizure with severe burns on his face and ankles due to “falling out of bed and rubbing his face”.
The grueling effect of his epilepsy saw his Tokyo 2020 Paralympic Games dreams dashed, and almost forced him to quit judo altogether – a sport he “absolutely loves”. However, with the help of British Judo and the charity Epilepsy Society, Evan has now been seizure free for three years.
He said: “Grateful is an understatement of how I actually feel. There are definitely lots of other ways this could have gone, and luckily, I’m able to sit here after going through all of that and be in the position that I am now.
“Back at that time, I had all these ambitions of being able to achieve and meet my potential, and now, to be able to look back on my former self and say, that’s becoming a reality, is a really, really rewarding feeling for myself. Obviously the job isn’t done for me, but if I had to stop my career today, there will be zero regrets because I was able to prove to myself that I could do it.”
Albinism affects the production of melanin – the pigment that colors skin, hair and eyes – and can cause poor eyesight. Evan’s condition means he has to wear glasses to prevent “discomfort” from light sensitivity, he uses a larger font on his phone, and his skin burns very easily in the sun.
He said he “hated” wearing glasses as a child, breaking between 10 to 20 pairs, as he did not want to be “different”. His peers would say hurtful comments and teachers would tell him his dreams were not possible.
However he quickly learned to “embrace his differences rather than rebel against them”. He said these “naysayers” only spurred him on when it came to pursuing his judo career.
He said: “I suppose, to a certain extent, I do hold on to those comments and people saying that I couldn’t do something, or, ‘that’s not possible’. But I definitely feel like it has contributed to me getting to where I am today, because it’s something that sits inside you, without you realizing it.”
Evan started judo when he was 13 years old, and it quickly became an “obsession”. He said he was “on the chubbier side” in his younger years but this soon changed after joining his local judo club in Devizes.
He then spent the following years training and travelling “up and down the country, going to every single competition that he could”. His first memorable win was at a West of England Open competition, a non-parasport event.
He even went to a ‘Paralympic Potential Day’ just one year after starting judo, where they assessed his potential to compete in the Paralympics. However, his epilepsy began to dominate his life from the age of 17, and devastatingly prevented him from competing in the 2020 Summer Paralympics in Tokyo, Japan.
He said he became an insomniac as a result of his epilepsy, felt extremely stressed, and his seizures often left him with friction burns on his body. He had to take time off judo, felt “emotionally separated from everything”, and it seemed like a “never-ending” cycle at the time.
Evan said: “I could go to training in the morning and, if I was extremely tired from training, I could go and put my head down and I’d have a seizure. With all the fighting that we do during the day, with judo being a fighting sport, unfortunately for me at the time, the fighting didn’t finish there.
“When I was in my personal space, the evening would come, and that’s where a lot of the difficulties arose because I became an insomniac because every time I slept, I had a seizure. I was scared to sleep, so I was never capable of putting in optimal training for performances because it was such a dominating factor in my life at the time.”
Evan’s epilepsy meant he was not able to perform to the best of his ability, which was “increasingly frustrating”. He said his condition was “out of control” by the time he was 20, and he “could not see an end”.
However, with the support of British Judo, the Epilepsy Society, and his family, Evan was placed on a waiting list to undergo video telemetry – a brainwave investigation – to learn more about his condition and how it impacts him. He was then able to receive the appropriate medication to get his epilepsy “under control” – and amazingly, he has not had a seizure since December 13 2019.
He said: “When I didn’t have the seizures to think about any more, I was able to feel so many different emotions that my body just wouldn’t let me feel because of everything I had going on. You don’t realize what you’re going through until you’re able to look back on it.”
He added: “Because of what they have done for me, I have now been able to put in the best attempt possible at achieving at the highest level of doing the thing that I love doing.”
Evan has competed all over the world – in places such as Brazil, Japan, Azerbaijan, and America – but he is extremely excited for the upcoming 2023 IBSA World Games in Birmingham. He trains in Walsall and said being able to compete on his home turf, with his family attending and supporting him, will be extra special.
He said: “Something that I say a lot is, when you want to try and achieve something, just never say no because if you show willing and you put the work in, you can guarantee something good will happen – and for me, it did, and I feel very lucky. It’s very exciting to have the opportunity to be able to compete in Britain, but with it being the world championships, the potential of me being a contender for a medal this time around as well is really exciting.”
Source: wiltshirelive.co.uk, Eleanor Fleming, Lorna Hughes
May 05, 2023 | Epilepsy, Human Interest Epilepsy, Neurology, News, Research, Seizures, Support
Alumni family takes on rare disease research to cure their child.
There’s an old saying in medicine when diagnosing patients: “When you hear hoof-beats, think horses, not zebras.” But our sweet baby boy, Tristan, is a zebra. He’s one of only 50 in the world. There are 20,000 genes and 3.2 billion nucleotides, and he was born with a random mutation in one single nucleotide. And that one mutation changes everything. Mutations in the KCNH1 gene cause profound intellectual disability and severe epilepsy. There are currently no treatments — but we’re trying to change that.
My husband, Kevin, and I met almost exactly 20 years ago as carefree undergraduates at UC San Diego. We loved our time there, and shortly after graduating, we married in 2007. As a young couple, we traveled around the world, completed our graduate studies and settled into our careers, me as a marriage and family therapist and Kevin as a high school social studies teacher. I had always wanted a big family with siblings close in age, and we were lucky to have three healthy little boys in three and a half years, all at UC San Diego hospitals. Our fourth and youngest son, Tristan, was 15 months old when he was diagnosed with a KCNH1 genetic mutation. The geneticist said this was the first case he had ever seen. He didn’t have any other information for us beyond an article he had printed out from the internet. So, even with a diagnosis, we were on our own to figure out what it meant.
I began to research everything I could find about KCNH1, and it was utterly devasting. Most kids with this mutation don’t progress beyond the developmental level of a toddler. They can’t self-feed or potty train, and the majority are nonverbal. They also suffer from hard-to-control epilepsy, gastrointestinal problems and sleep disturbance. Many are wheelchair users and dependent on feeding tubes. Tragically, many die from seizures or other complications.
I was completely crushed and overwhelmed envisioning my son’s future. I wasn’t ready to accept this fate for Tristan. I knew the technology exists for gene therapies, and I wondered if we could create one for Tristan. I started emailing researchers, doctors and rare disease advocates all over the world.
I learned that there are families who have raised millions of dollars to fund the development of treatments for their kids. If it could be done, I was determined to do it for Tristan.
We established the Cure KCNH1 Foundation in late 2021. In a little over a year, we have gathered a scientific team from around the world, coalesced the patient community and raised over $350,000 toward the development of treatments. In collaboration with academic partners, we are developing invaluable research tools such as cell lines, knock-in mouse models and other in vivo and in vitro models.
We’re working on three translational medicine approaches. The first is to identify repurposed medications that can help correct the potassium channel dysfunction caused by the KCNH1 mutation. The second is to develop an antisense oligonucleotide therapy that can suppress the creation of toxic proteins. And our long-term approach is to create a gene-editing “cure” that can correct that one tiny nucleotide misspelling.
This work — developing precision treatments — is at the forefront of scientific progress in medicine, and it has applications far beyond the tiny KCNH1 community. Like some other rare diseases, KCNH1 has a direct link with cancer; the gene is over-expressed in 70% of cancerous tumors. It is our hope that the work we do for KCNH1 may offer insight into new treatments for devastating diseases that affect millions of Americans.
Kevin and I are doing everything we can to advance life-changing treatments for Tristan and the other KCNH1 kids. With the support of dedicated scientists and an amazing community, we have made it our life’s mission to find a cure. When your son is a zebra, you have no other choice.
Source: today.ucsd.edu, Michaelle Jinnette
May 03, 2023 | Causes, Epilepsy, Human Interest Epilepsy, Mental Health, Seizures
LIFE with epilepsy won’t get in the way of this Wickford woman from doing anything she puts her mind to.
Around 630,000 people in the UK are living with epilepsy. Emma Evens is one of them.
Emma, from Wickford, was diagnosed with the condition when she was just six years old; learning as a teenager she has a rare genetic mutation and a drug-resistant form of epilepsy.
The nature of Emma’s condition means she doesn’t get any warning for her seizures, which have occurred in dangerous places like train platforms, zebra crossings, and swimming pools.
As an adult, the charity worker is determined to live an ordinary life and says she “wouldn’t change a thing”.
“Having epilepsy has made me who I am today,” said Emma.
It’s been a long road for the 32-year-old, whose mental health took a hit as a result of the diagnosis.
She explained: “I was constantly asking myself why I couldn’t be ‘normal’. I’ve struggled with depression and strong feelings of anger, which I’d direct against everyone who was close to me.
“School was not a happy time in my life. I struggled a lot, I often behaved in a way that caused me to lose friends as quickly as I made them.”
Entering the world of work was a challenge, too, with Emma receiving disciplinaries because of the number of seizures she was having and even being avoided by colleagues out of fear she would have a seizure in front of them.
Data from a survey by the charity Epilepsy Action, who provides a range of support services to help people coping with diagnosis and daily life with epilepsy, reveals there is still a clear lack of understanding about the condition, with nearly nine in ten people believing at least one myth about it.
Despite the challenges she faced, Emma is thriving in her personal and professional life.
Emma added: “I am very proud of myself, despite my challenges within school and previous workplaces.
“I have completed a business administration course, which I would consider my biggest achievement so far, and have worked my way up to an executive assistant role within a charity. I love what I do.”
Source: echo-news.co.uk, Eillot Deady
May 02, 2023 | Epilepsy, Human Interest Epilepsy, Seizures
Videos that feature flashing lights or strobe effects can be annoying to almost everyone, but for people with epilepsy those type of videos can be potentially dangerous.
The iPhone and iPad have a handy accessibility feature that will automatically detect and dim any flashing lights or strobe effects when seen in videos.
How to Automatically Dim Flashing Lights in Video on iPhone & iPad
You will need iOS 16.4 / iPadOS 16.4 or newer to have access to this setting:
- Open the “Settings” app on iPhone or iPad
- Go to “Accessibility”
- Look for “Vision” and tap on “Motion”
- Toggle the switch for “Dim Flashing Lights” to the ON position
- Exit Settings
As a system setting, this change should impact all apps and videos that are played on the iPhone or iPad, automatically dimming the flashing lights or strobing effects that can be found in many videos online, in games, and elsewhere.
Below the setting is a description for what the feature is and how it works, stating “Video content that depicts repeated flashing lights or strobing will be automatically dimmed”. This is important to note because the dimming of flashes occurs in video content only, not with other screen content that could be flashing.
As usual, you can reverse this settings change easily too if you decide you do not like the feature, or it is not needed. Simply return to Settings > Accessibility > Vision > Motion > and toggle the switch for “Dim Flashing Lights” to the OFF position. This will return the iPhone or iPad back to the default setting, where flashing and strobing effects are seen as usual on the device when watching videos.
Do you use the setting to dim flashing lights on your iPhone or iPad? If so, you may also appreciate using the same accessibility feature on the Mac too.
May 01, 2023 | Causes, Epilepsy, Human Interest Epilepsy, Research, Seizures, Support
Stigma affects all aspects of epilepsy care, from diagnosis and treatment to nationwide legislation and budget allocations. It affects the lives of people with epilepsy when they are not given equal access to education, employment, and social opportunities. A population-based study in the United States found that one-third of respondents identified stigma-;not seizures-;as the most difficult part of living with epilepsy.
Last year, the International Bureau for Epilepsy (IBE) published the Advocate’s Toolkit for Reducing Epilepsy Stigma in Africa. It’s the first in a series of toolkits that will be tailored to regions around the world.
The timing was perfect, because of the passing of the WHO Intersectoral Global Action Plan on Epilepsy and other Neurological Diseases. But more importantly, the approach for the toolkit was to recognize that we need to empower people with epilepsy. They are the best champions to reduce stigma, because they live with it on a day-to-day basis.”
Mary Secco, IBE’s chair of global outreach and a key participant in the toolkit’s production
The resources, ideas, and guidance in the 64-page toolkit come from people with epilepsy, all of whom live in African countries. Their stories are peppered throughout the document, along with practical information, best practice examples, case studies and templates that enhance advocates’ capacities to plan and execute effective stigma reduction interventions.
Three types of stigma
All three types of stigma -; internalized, interpersonal, and institutional -; must be addressed in order to close the treatment gap and improve the lives of people with epilepsy, Secco said. And disclosure is a crucial step.
“If you live with epilepsy, we want to give you the courage and the tools to tell people you live with epilepsy,” she said. “Because when we keep this a hidden condition, then governments can continue to discriminate, because they can say, ‘Nobody really has this condition’ or, ‘It doesn’t matter to my constituents.’ Health care providers can say, ‘I’m not allocating a budget to epilepsy; it’s not a big deal.’ But if people with epilepsy stand up and say, ‘It is a big deal – it affects me and my family’ – then we can see stigma starting to be dismantled.”
Stigma stems from misconceptions and fear. Whether it’s a child, a teacher, a legislator, or a physician, those who do not understand epilepsy develop alternate explanations for its signs and symptoms.
Stigma as a barrier to diagnosis
Jessie Nyirenda had her first seizures as a young teen. They started as absence seizures and were dismissed by her teachers as an “attitude problem.” When they progressed to include motor involvement, Jessie’s parents took her to a doctor -; who told them she was throwing tantrums for attention.
Her mother also took her to several churches, in hopes of exorcising any demons that might be responsible for her seizures; later, they visited a traditional healer, who told them that someone in her father’s family had probably cursed Jessie. Both Nyirenda and her mother were skeptical of this explanation and did not visit the healer again. But they still didn’t have answers.
“In the focus groups of people living with epilepsy, we said, ‘What are the biggest misconceptions in your community that you believe perpetuate stigma?'” said Secco. “A challenge is that people believe that a person who has seizures is demon possessed or bewitched. People with epilepsy have to stand up and tell others, because the credibility is in them being members of their community, they have to say, “This is a brain condition… it has nothing to do with being bewitched and nothing to do with demons.”
Nyirenda did not know she had epilepsy until 6 years after her seizures began. After the initial flurry of visits to the doctor, churches, and traditional healer, she and her family dealt with the seizures without a diagnosis for several years. When Nyirenda was visiting her sister in the UK, she decided to do some library research on what her condition could be. She came across the term “Jacksonian epilepsy.” When she returned to Zambia, she was finally diagnosed.
“I had support from my immediate family; we stood strong and realized that it’s a medical condition and I continued with taking the medication,” Nyirenda said. “But others sort of try to convince you there is something spiritually wrong with you. I felt I was less of a person, and I had to do so much more to convince everyone else that I too was human.”
In addition, the physicians that Nyirenda visited were psychiatric specialists, not neurologists -; and because the stigma attached to mental health conditions also is very strong, this affected her. “The doctors I could see were at a hospital where there also was a mental asylum,” she said. “So even just the thought that I’m going to get my medication from a mental hospital was like a reaffirmation that I am mad.”
Stigma as a barrier to treatment
Focus group members said they often felt stigmatized by Western (biomedical) health care providers, who treated them as “less than.” They often visited a traditional healer first, because they said traditional healers do not stigmatize people with seizures.
“People kept saying, ‘That’s our first port of call,’ traditional healers,” said Secco. “For us to then say, ‘Well that’s not the way we do it’ is actually hurting people with epilepsy. If anyone needs to compromise, it’s biomedical providers understanding how to work within that system.” She suggested that collaborative models of care for other conditions, such as tuberculosis and HIV/AIDS, may help provide solutions in this area.
Stigma is particularly detrimental to African women with epilepsy, in that it can affect marriage prospects and parenting, as well as education and employment.
“In cultures where there’s arranged marriages, or in cultures where the role of the woman is to have the children and provide for the needs of the family, often times if a woman has epilepsy, she can be disqualified from those roles,” said Secco. “And then she does not have a lot of options… what we’re seeing in some lower- and middle-income countries that have very strong cultural beliefs around marriage is that the women are being banished and ostracized.”
Disclosure counteracts stigma
Nyirenda joined an epilepsy support organization in her 20s, and said that this group, as well as support from her family, shielded her from some of the discrimination that befalls other women with epilepsy in Zambia. “From early stages, I would declare to everybody that ‘Yes, my name is Jessie and I’m living with epilepsy and I’m on medication, there is nothing wrong with me.’ I think that position that I took in accepting it made people realize, ‘She’s accepted it and she’s living with it; what negative thing can we say?'”
She works as a financial counselor, traveling throughout the country, and has always disclosed her condition to her employers.
“I have photosensitive epilepsy, so the computers would be affecting me because of the flickering lights,” she said. “In my first job in the bank, I had declared that I had epilepsy and I also informed them that I needed a screen filter to prevent me from having seizures. So because I was proactive, I didn’t hide it from them, the company was compelled to buy the necessary equipment.”
Nyirenda also is a mother of three, and one of her children has epilepsy. His first seizures were similar to hers, and began in his early teens, as hers did. Her experience and knowledge made his diagnosis far easier than hers was.
His teachers began complaining that he was ignoring them in class and not responding to questions. “Then I noticed how he would sort of jerk a little bit and immediately I took him to the hospital. They diagnosed him with epilepsy and he’s on medication.”
Addressing institutional stigma
The family did experience stigma, however, from her son’s school. “Before he had stabilized, he would have seizures whenever he would get nervous, and the school told me I would have to withdraw him because they didn’t know how to deal with it. I would like to see a situation where teachers are more informed, where treating epilepsy should be part of the core first aid treatment, where teachers shouldn’t fear to teach children who are living with epilepsy, because imagine if all the schools turned him away.”
Legislation that protects the human rights of people with epilepsy is rare in Africa. Changing this is a major aim of IGAP; its global target 5.2 states that 80% of countries should have developed or updated their legislation with a view of promoting and protecting the human rights of people with epilepsy by 2031.
“Very few African countries have health laws to protect people with epilepsy, and those that do often don’t enforce the laws,” said Secco. “Knowing this is critical, and one reason we developed the toolkit. We need to be on top of our governments, be very proactive when we look at implementation of the IGAP because governments can say they’re going to do something, but they may or may not do anything at all.
“So it’s up to us, as people who care about the outcomes for people with epilepsy, to keep it on the radar for policymakers,” she said. “We can continue to go to governments and say, ‘Hey, what have you done? You said you were going to look at your legislation – have you done it?'”
Source: news-medical.net, International League Against Epilepsy (ILAE), Emily Henderson
April 27, 2023 | Epilepsy, Human Interest Epilepsy, Surgery
The Spandau Ballet star has been open and honest about his battle with brain tumors and the long term effects they have left him with, including epilepsy and dyslexia
Martin Kemp is well known for being part of band Spandau Ballet and for his role as Steve Owen in Eastenders.
Married to former Wham! star Shirlie Holliman, the couple share son Roman, who has also gone on to become a household name thanks to his radio show and his stint on I’m A Celebrity.
However, what many people may not know about Martin is his health battle.
The musician and actor was diagnosed with two brain tumors in 1995, after discovering a lump, and over the next three years had treatment to remove them.
The brain tumors were first noticed after Martin found a concerning lump on the back of his head. Following an MRI scan, doctors discovered that the bassist had two brain tumors. The larger one was just below his skull, the other embedded deep in his brain.
He underwent an operation and radiotherapy to treat them and has since revealed the impact that it has had on him long term.
The tumors have left him epileptic, dependent on medication and dyslexic.
He has said that in the aftermath of the treatment he got his role in Eastenders and his “brain wasn’t working properly”.
Speaking on the Dish podcast with Nick Grimshaw and Angela Hartnett, he said: “When it was offered to me, it was only really about five years after I had gone through the whole brain tumour business, that I went through in the nineties, about 95, and so for me, I was struggling to get myself together and my brain wasn’t working properly still from the operation.
“To the point where sometimes if I wanted to walk left, I would walk right, or like I couldn’t think about putting things in order, or anything like that. Learning lines was just way out there.
“When EastEnders was offered to me it was a chance for me to get over it, so it wasn’t just me taking EastEnders on because I thought yeah, it was a good gig – it was me trying to get my life back together.
“I honestly didn’t even know if I could remember the lines because my brain was so messed up from it.”
Source: rsvplive.ie, Erica Carter
April 26, 2023 | Epilepsy, Neurology, Research, Seizures, Technology
- Human GABAergic interneurons were implanted in two patients with drug-refractory focal epilepsy.
- Preliminary results show participants have experienced greater than 90% seizure reduction since surgery.
BOSTON — Implantation of GABAergic interneuron cells in two patients with drug-resistant focal epilepsy resulted in significant seizure reduction, according to preliminary data presented at the American Academy of Neurology annual meeting.
“Unfortunately, not all patients are candidates for epilepsy surgery, and for those who are, surgery carries some risk,” David C. Spencer, MD, director of the Comprehensive Epilepsy Center and professor of neurology at Oregon Health & Science University, said during an AAN-sponsored press conference prior to the meeting. “Our work is studying the possibility of boosting inhibition in the seizure focus, using implanted human inhibitory neurons.”
Spencer and colleagues sought to examine whether implantation of human GABAergic interneurons could control seizures in individuals with drug-resistant mesial temporal lobe epilepsy.
They conducted a first-in-human phase 1/2 clinical trial and enrolled two individuals with unilateral mesial temporal lobe epilepsy with hippocampal sclerosis and refractory focal seizures. The pair underwent EEG, MRI and memory, mood and visual field assessments, and received immunosuppressive therapy one week prior to implantation, which tapered after 1 year.
Researchers implanted the cells at the back of the skull along the long axis of the hippocampus using MRI guidance. Implantation occurred without complication and on target in both participants, who recovered overnight and were allowed to return home the next day.
According to preliminary results, the first participant — who was dosed 6 months ago — has had a 93% seizure reduction from a baseline (32 seizures/month) at 8 months follow-up, and has not had a focal awareness-impaired seizure since the first month. The second participant is 2 months out from dosing and has experienced a 94% reduction in seizure frequency, from 14 per month at baseline to one since surgery. No serious adverse effects have been reported.
“We are very excited by this approach, which is restorative instead of destructive,” Spencer said. “And while these are still early days, we are encouraged by the positive safety findings so far and intrigued by some of these early seizure responses.”
Source: healio.com, Robert Herpen
April 25, 2023 | Epilepsy, Neurology, Seizures, Surgery, Technology
Neurosurgeons are turning to whole-brain simulations to better understand and treat epilepsy
According to a Singularity Hub article, a team of neurosurgeons is using whole-brain simulations to pinpoint the source of their patients’ seizures. In a recent study, the team used brain simulations to identify the origin of seizures in two patients with epilepsy. The simulations allowed the team to better understand how electrical signals move through the brain and pinpoint the specific area that was causing the seizures. The findings could help doctors more accurately diagnose and treat epilepsy, which affects millions of people worldwide.
The simulations are part of a growing trend towards using computer models to better understand the human brain. By simulating the activity of billions of neurons in the brain, researchers hope to gain new insights into how the brain works and develop new treatments for brain disorders. While the technology is still in its early stages, it holds promise for revolutionizing our understanding of the brain and improving outcomes for patients with neurological disorders.
Source: healthcarepackaging.com, Tim Hayes
April 24, 2023 | Human Interest Epilepsy, Surgery, Technology
Surgery is a cost-effective treatment for drug-resistant epilepsy, with limited evidence suggesting that VNS, RNS, and DBS are too.
In patients with drug-resistant epilepsy (DRE) considered surgically eligible, epilepsy surgery is shown to be a more cost-effective treatment than standard medical management. These are the findings of a systematic review published in Neurology.
Patients with DRE experience “continued seizures despite adequate trials of two or more antiseizure medications.” The early use of effective treatment strategies is critical in this population since DRE is associated with much of the epilepsy-related burden worldwide. Although the use of epilepsy surgery has demonstrated superiority to medical therapy alone in certain groups with DRE, epilepsy surgical procedures remain underutilized.
For the study, researchers sought to establish the presence of and key model determinants of the cost-effectiveness of surgical and neurostimulator treatments for patients with DRE, compared with medical management alone, in an effort to help channel resource allocation.
Researchers conducted a literature search of relevant studies published in international peer-reviewed journals and included studies based on the following criteria: a target population comprised adults ≥18 years of age with DRE; intervention of interest was epilepsy surgery, vagus nerve stimulation (VNS), deep brain stimulation (DBS), or responsive neurostimulation (RNS); and comparator of interest was continued use of antiseizure medication.
There is consistent evidence that epilepsy surgery is a cost-effective treatment for eligible candidates with DRE.
Primary outcomes evaluated included health care costs, quality-adjusted life-years (QALYs), years of life lived (YOLLs), and years of life saved (YOLS).
Researchers used the incremental cost-effectiveness ratio (ICER) to compare the primary outcomes. A lower ICER was indicative of greater cost-effectiveness.
A total of 10 studies fulfilled the eligibility criteria, 7 of which assessed epilepsy surgery and 3 of which evaluated neurostimulation therapies. Of the 10 studies, 8 reported on cost-utility analyses with QALY as the outcome, whereas 2 were cost-effectiveness evaluations in which seizure freedom was the outcome. In all 10 studies, standard medical management with antiseizure medications alone was the comparator.
Researchers found that in all 7 studies in which epilepsy surgery was evaluated, it was reported to be a cost-effective intervention, with 3 of the studies implying it to be a dominant strategy. In 2 studies, VNS was shown to be either cost-effective or potentially cost-effective, 1 study demonstrated that DBS was potentially cost-effective, and 1 study showed that RNS “very likely falls within the range of cost-effectiveness.”
To determine the confidence of their conclusions, the researchers performed sensitivity analyses. According to the base case probabilistic sensitivity analysis, the probability of the results being cost-effective were from 84.0% to 99.7% for epilepsy surgery and from 1.0% to 99.7% for neurostimulator treatments.
Researchers found that epilepsy surgery is a cost-effective intervention compared with medical management alone, in terms of QALYs, as well as 2-year and 5-year freedom from seizures. ICER, which was reported for 9 of the 10 studies, varied between GBP £3013 and US $61,133. Based on cost adaptation, ICERs ranged from US $170 to US $121,726.
Study limitations included the lack of restrictions put in place on publication data. Further, only English publications were included in the current analysis. Additionally, there are few randomized, controlled trials on epilepsy surgery available in the literature.
Researchers concluded that “There is consistent evidence that epilepsy surgery is a cost-effective treatment for eligible candidates with DRE. Limited evidence suggests that VNS, RNS, and DBS may be cost-effective therapies for DRE, although more health economic evaluations alongside prospective clinical trials are needed to validate these findings.”
April 23, 2023 | Epilepsy, Human Interest Epilepsy, Neurology, Seizures, Surgery
How do I know if I’m a candidate for vagus nerve stimulation (VNS)?
VNS is primarily used for people whose epilepsy, depression, migraine, or cluster headaches aren’t responding sufficiently to medications, or for those who can’t tolerate medications. If you’re interested in VNS, discuss it with your doctor, says Kevin J. Tracey, MD, a neurosurgeon and president of the Feinstein Institutes for Medical Research at Northwell Health in Manhasset, NY.
Do I need to be a certain age to be eligible for VNS?
It depends on the condition being treated. For epilepsy, VNS is approved for people 4 years and older, says Lily Wong-Kisiel, MD, FAAN, a pediatric epileptologist at Mayo Clinic in Rochester, MN. It can be used to treat migraine attacks in people 12 and older, says Deborah I. Friedman, MD, MPH, FAAN, a neurologist and neuro-ophthalmologist in Dallas, and to prevent and treat cluster headaches in adults. For drug-resistant depression, it’s approved for people ages 18 and older.
How complex is the surgery, and how long does it take?
The outpatient surgery is straightforward and takes less than 90 minutes, according to Angus Wilfong, MD, professor of child health and neurology at the University of Arizona College of Medicine–Phoenix.
Will I be able to feel the electrical stimulation? Is it uncomfortable?
Some people experience temporary hoarseness or voice changes while the stimulation is on, Dr. Wong-Kisiel says. But VNS should not be painful or uncomfortable.
Does having a VNS device implanted restrict physical activity?
It’s safe to exercise and play sports with the implant, but avoid contact sports like football, Dr. Wong-Kisiel says.
Do I have to do anything special after having the device implanted?
It’s important to care for the incisions, per your doctor’s instructions, to prevent infection after the device is surgically implanted, says George Morris, MD, MPH, FAAN, medical director for epilepsy at Ascension Medical Group in Milwaukee.
Can I have an implanted device removed if I don’t like it?
Yes, the device can be removed if it is ineffective, uncomfortable, or unwanted, Dr. Morris says.
How long does the VNS battery last?
Batteries last six to 10 years, depending on the amount of stimulation required, Dr. Wong-Kisiel says.
Is VNS covered by insurance?
Medicare covers VNS for people with drug-resistant partial seizures for whom surgery is not recommended or for whom it has failed, treatment-resistant depression, and stroke rehabilitation, according to the Centers for Medicare and Medicaid Services. Insurance does not usually cover handheld devices such as gammaCore, but gammaCore has a patient assistance program that can offset costs. If you’re considering VNS, double check with your insurance company about coverage.
Source: brainandlife.org, Stacey Colino
April 21, 2023 | Epilepsy, Human Interest Epilepsy, News, Seizures
As part of the European Union (EU) funded Coordination and Transformation of Mental Health Services in the Post-conflict Settings project, implemented by World Health Organization (WHO) Azerbaijan, a training program took place at Barda District Central Hospital in collaboration with the Ministry of Health and TABIB.
MhGAP is a practical approach to improving access to mental health services in countries. Since its launch in 2008, mhGAP has been implemented to more than 100 countries, allowing many individuals to receive treatment for epilepsy, schizophrenia, and depression as well as suicide prevention and helped people live healthy lives even in areas with limited resources.
Previously qualified national trainers Dr. Nigar Novruzova from the Ministry of Health and Dr. Malahat Osmanli from TABIB delivered the training that aimed to equip primary care physicians with skills to identify, manage, and refer the most common mental health disorders.
The training also covered sessions on mental health disorders such as clinical depression, anxiety disorders, post-traumatic stress disorder and stress, as well as basic principles of providing appropriate support to individuals seeking help. Role-plays and group work were organized in order to enhance practical skills.
The Coordination and Transformation of Mental Health Services in Post-conflict Settings is an EU-funded project implemented by WHO Azerbaijan to improve mental healthcare services at the primary care level.
The project aims to help establish a multidisciplinary coordination mechanism for MHPSS and to build mental healthcare response capacity in PHC facilities. This project is part of the European Union’s and the WHO’s continued support to Azerbaijan.
April 20, 2023 | Epilepsy, Human Interest Epilepsy, Seizures, Support
When Curt Anderson, 54, wanted to go back to college after a 30-year break, he had to do something very few people could do.
Anderson is a father of three and a full-time caregiver. His adult son Ty Anderson, 28, has one of the rarest forms of epilepsy known to medicine and is non-verbal. He has been on every family of anti-convulsant medication and at one point was having 30-40 grand mal seizures a day. So, wherever Anderson went, he needed to make sure Ty could come too.
He found a way to do that in a supportive environment at the University of Alabama at Birmingham. Anderson will graduate April 28 with a Master of Arts degree in communication management from the College of Arts and Sciences’ Department of Communication Studies.
For the past two years, three or four days a week, Curt Anderson and his son made the 100-mile round-trip journey to class from Tuscaloosa to Birmingham. Through their roughly 12-hour days, Ty accompanies Curt Anderson in class, first as a teacher for midday Communication 101, then as a student in the evening. If Ty has a seizure, his father will hold him until it is over. He typically knows when a seizure is coming. At the worst times, Curt Anderson has had to sit in the hall and hold Ty and block the door with his foot, so he could still hear to take notes. Ty attends the classes his dad teaches and takes.
There was no program in place for people in his position; but by working with the department chair, Distinguished Professor Timothy Levine, Ph.D., the unusual arrangement was approved. “UAB is a place of inclusivity,” Levine said, “and everyone has been supportive and with no complaints.” Students even asked about Ty the one day he was not in class.
Ty, who has had more than 12,000 seizures in his lifetime, was one of the original participants of the landmark cannabidiol, or CBD, oil study done at UAB. The study findings showed significant improvements in seizure frequency and other measures of efficacy in patients with treatment-resistant epilepsy. Ty started taking CBD oil and this medicine has thankfully cut his seizures in half, and given him and his family an opportunity to live more fulfilling lives.
The connection between magic and deception
Anderson’s story began as a child with a keen interest in performing magic arts. He had his first paid role as a magician at age 11 and was performing on the road at age 13. He studied communications in college but dropped out during his junior year to pursue a full-time career as a magician. He is friends with the world’s most famous magicians, and performing and teaching magic sustained him — until the pandemic.
Anderson had been guest lecturing on lying and deception at the University of Alabama in Tuscaloosa. When COVID hit, the professor told him he would be a good teacher and recommended he consider finishing his degree. He helped him get a full scholarship, with a year to earn his undergraduate degree.
During that time, he met Levine, a nationally renowned deception researcher. Curt and Ty Anderson would meet with Levine when they came to Birmingham for Ty’s medical appointments with physicians in UAB Medicine’s Epilepsy Center — Alabama’s only Level IV epilepsy center, the highest designation available from the National Association of Epilepsy Centers and home to some of the nation’s most experienced epilepsy specialists. Levine offered Anderson a scholarship and graduate assistantship if he would come to UAB as a teaching assistant.
Teaching and research
As a teacher, Anderson has received the highest marks for any instructor in the course, and the students like Ty as well as Anderson’s engaging magic tricks. As a student, Anderson has had straight A’s.
Having been a professional stage performer gives him huge credibility on the topic of deception, and he has a promising second career ahead of him in academics, Levine says.
“He has been phenomenally successful teaching for us, and the students not only learn much from him, but also really enjoy his class,” Levine said. “It is absolutely incredible that Curt can manage being a full-time caregiver and a full-time graduate student, teach two classes for us, and make progress on his research, while learning how to do research.”
The department has been happy to support him as they can.
“I think it says so much about the character of UAB faculty and students that they are so supportive about allowing Curt to bring his son with him to class,” Levine said.
Anderson’s goals are to research deception and magic and be a professor who teaches.
“The two worlds see deception very differently, and I feel like there is something to be learned in each area from the other,” Anderson said. “Scientifically, we see that people deceive. How are we going to test this?”
He interviewed several magicians who have headlined their own Las Vegas shows and asked them: When you do a deception, when you make a new trick, when you are fooling an audience, how do you go about doing this?
“If we can find out how people react, we can teach magicians to build better deceptions,” Anderson said. “And if we find out how magicians build deceptions, we can help the scientific community understand how deception is built and make it easier to uncover deception.
Anderson has accepted a place in the Ph.D. program at the University of Tennessee, Knoxville, starting this fall.
“They are all-in on me and Ty,” Anderson said. “They have been extremely accommodating of Ty. We both feel very welcome, and I believe I can flourish as both a researcher and an instructor there.”
Source: uab.edu, Shannon Thomason
April 19, 2023 | Epilepsy, Migraine, PNES, Seizure Detection, Seizures, SUDEP
Stress impacts us differently, and one way it does it so is through stress-induced seizures. What impact does stress have on you? Some of us have trouble falling asleep. Some people may experience frequent tension. Moreover, stress-induced seizures become a serious problem for people with epilepsy.
According to surveys, stress is the second most common trigger for seizures in people with epilepsy. Despite the fact that many people believe stress and seizures are related, experts are unsure of the precise reason.
What is stress? Are stress-induced seizures a real thing?
The body’s reaction to tensions from the outside world is stress. It might be brought on by things like work-related difficulties, relationship troubles or academic tests. Some hormones begin to be produced by the body when we’re under stress. The immune system may become activated, and a flight or fight reaction may be triggered.
Small quantities of stress might be beneficial, as they encourage you to work harder or pay attention. However, persistent stress can become overpowering and can be detrimental to health. There’re strategies to deal with stress so that you don’t feel overwhelmed and nervous, even if it’s an inevitable part of life. Some may experience persistent anxiety, unease or distress for no obvious reason.
However, receiving an epilepsy diagnosis or worrying about unanticipated or uncontrolled seizures can increase stress and anxiety. Anxiety may occasionally even be a consequence of epilepsy medication.
It can be difficult to control anxiety, which may be brought on by the same triggers or atypical brain processes that causes your seizures. That can result in agitation or compulsive tendencies, which are frequently observed in epileptics.
It can be difficult to tell which condition occurred first — the stress and anxiety or epilepsy — or if they simply feed off each other in an annoying loop, as anxiety can affect both mental and physical health, as well as aggravate them.
Unmanaged stress that develops into persistent anxiety that has no apparent cause might cause epileptic episodes. Stress not only causes production of some hormones that might affect the brain, but it can also cause seizures to start in the same sections of the brain that regulate emotions.
Sleep may be impacted by stress and ongoing anxiety, which is another risk factor for more seizures.
How can stress cause seizures?
Stress is a necessary component of our daily existence. Stress typically results from specific circumstances or events that have occurred in our life, frequently and unexpectedly.
The tense scenario is frequently the result of several events coming together. The body automatically responds to changes brought on by stressful situations by producing physical and emotional responses.
We naturally respond to these stressful situations with feelings like irritation, panic, concern, grief or fury. These are emotional responses, but what can cause a seizure is the physical response of the body to stress.
When the brain’s level of excitability shifts, it creates chemical imbalances that result in seizures. Neurons start firing erratically as a result of these imbalances. When that occurs, it gets out of control and may cause a seizure. Several factors can change how excitable the brain is and cause a seizure.
Symptoms of stress-induced seizures
Many physical and mental symptoms, like psychogenic non-epileptic seizures can be brought on by stress. PNES was formerly referred to as pseudoseizure, but that term is no longer appropriate.
Stress-induced seizures can also be brought on by anxiety and stress in people without epilepsy. PNES is biologically distinct from epileptic neurological seizures. Despite the similarities between PNES and neurological seizure symptoms, there are some distinctions between the two.
Stress-induced seizures, for instance, may manifest some of the signs and symptoms of neurological seizures, like:
- Lesser level of consciousness
- Loss of physical awareness
- Thrashing or flailing
- Head arching
- Biting of the tongue
PNES is distinguished by the fact that the aforementioned symptoms typically manifest more gradually and persist for a longer periods than neurological seizures.
Although stress-induced seizures cannot always be anticipated or managed, there’re steps you can take to reduce your risk of experiencing one. Your behavior can also influence how likely you’re to experience a seizure.
Try to recognize the purple day, and increase your awareness of epilepsy and related disorders. Treating the underlying stress and anxiety can help lessen or stop these episodes, as they have a mental cause. Seek a doctor for a proper diagnosis and treatment if you’re worried that you have recently experienced stress-induced seizures.
Source: sportskeeda.com, Bhargav, Janvi Kapur
April 18, 2023 | Epilepsy, Human Interest Epilepsy, Neurology, Research, Seizures, Technology
Epilepsies are chronic neurological disorders in which large groups of neurons firing at the same time generate electrical activity that causes seizures and involuntary movements. They are one of the most common brain diseases in children and, in almost a quarter of cases, patients do not respond to standard medical treatments. Life-threatening treatment-resistant epilepsy often results from tissue that was damaged or developed abnormally during prenatal brain formation, known as malformations of cortical development (MCD).
Epilepsy resulting from MCD is a rare but serious condition. Although some types of epilepsy run in families, the genetic cause of MCD is unclear. New research funded by the National Institute of Mental Health (NIMH), National Institute of Neurological Disorders and Stroke, and National Institute on Aging sheds light on genetic mutations that may play a key role in the development of epilepsies. The study provides insights that could lead to improved diagnosis and treatment of diseases with origins in early brain development.
Led by Joseph Gleeson, M.D., at the University of California San Diego and the Rady Children’s Institute for Genomic Medicine, the study was a multicenter international collaboration. The researchers looked for mutations in the brain that may contribute to MCD. They performed genetic profiling of tissue using advanced detection techniques and best practice guidelines from the Brain Somatic Mosaicism Network—an NIMH-supported network of investigative teams working together to study mutations present in a small subset of brain cells.
Almost 300 children with diverse forms of MCD provided brain tissue through the Focal Cortical Dysplasia Neurogenetics Consortium. Brain samples were collected as part of surgery to treat epilepsy. For each person, paired blood or saliva samples were also collected, as were parental samples when available. The researchers included brain tissue from a small sample of people without neurological conditions for comparison and validated a subset of identified genes via patient biopsies and in mice.
Comprehensive screening to identify genetic causes of MCD proceeded in three phases:
- Targeted examination of genes in the mTOR pathway, which regulates cell growth, proliferation, and metabolism and shows excessive signaling in the brains of people with epilepsy
- Unbiased gene discovery to identify new genes that may be associated with MCD
- Independent testing in a new sample to confirm the genes identified in the first two phases
Additional analyses looked for networks of genes with related functions involved in brain development and at links between identified genes and clinical and behavioral features of the disease.
This study identified 69 mutated genes associated with MCD. Of these, 60 were genes linked to MCD for the first time. Twelve of the mutated genes were recurrently mutated, meaning they were identified in at least two different patient brain samples, giving more confidence that they contribute to MCD. Among the recurrently mutated genes were two genes linked to MCD for the first time and another three genes identified in prior studies. These data suggest that researchers have only scratched the surface of the number of genes involved in epilepsy and may identify more genes in future studies.
The results also confirmed the critical role of the mTOR pathway. This pathway is dysregulated in several human diseases, including cancer and diabetes. As such, the mutations could have implications for risk for any number of diseases and disorders.
To test the function of the mutations, the researchers introduced mutated or non-mutated forms of the identified MCD genes into a small region of the brain in developing mice. Introduction of the mutated genes led to the development of brain abnormalities similar to those seen in humans with MCD, indicating that many of the mutated genes likely contribute to features of the disease. Further analyses revealed four major networks into which the mutated genes clustered, all of which play critical roles during early brain development. These groups of genes correlated with clinical features of the disease. Together, the results showed that the mutated genes are vital to cortical development and related to patient outcomes later in life.
The findings of this study have important implications for treatment-resistant epilepsy and related diseases, as well as for human brain development. The identified genes could offer potential drug targets, help inform new clinical classifications and diagnoses, and ultimately lead to personalized treatments or early interventions for a range of mental and physical health conditions.
The current sample size was larger than in previous studies, leading to the discovery of many new genes. The researchers’ use of state-of-the-art methods and independent validation of genes also enhanced confidence in the results. However, confirming the current set of genes and identifying new MCD-related genes will require replication in larger samples. Future research taking advantage of this study’s innovative roadmap for studying rare genetic variants will also help answer important questions, such as the contribution of environmental versus genetic factors in disease.
April 17, 2023 | News
Frontal lobe seizures are a common form of epilepsy, a neurological disorder in which clusters of brain cells send abnormal signals and cause seizures. These types of seizures stem from the front of the brain.
Abnormal brain tissue, infection, injury, stroke, tumors or other conditions can also cause frontal lobe seizures.
Because the frontal lobe is large and has important functions, frontal lobe seizures can produce unusual symptoms that can appear to be related to psychiatric problems or a sleep disorder. They often occur during sleep.
Medications usually can control frontal lobe seizures, but surgery or an electrical stimulation device might be options if anti-epileptic drugs aren’t effective.
Frontal lobe seizures often last less than 30 seconds. In some cases, recovery is immediate.
Signs and symptoms of frontal lobe seizures might include:
- Head and eye movement to one side
- Complete or partial unresponsiveness or difficulty speaking
- Explosive screams, including profanities, or laughter
- Abnormal body posturing, such as one arm extending while the other flexes, as if the person is posing like a fencer
- Repetitive movements, such as rocking, bicycle pedaling or pelvic thrusting
When to see a doctor
Frontal lobe seizures, or frontal lobe epilepsy, can be caused by abnormalities — such as tumors, stroke, infection or traumatic injuries — in the brain’s frontal lobes.
Frontal lobe seizures are also associated with a rare inherited disorder called autosomal dominant nocturnal frontal lobe epilepsy. If one of your parents has this form of epilepsy, you have a 50 percent chance of inheriting the abnormal gene that causes this disorder and developing the disease yourself.
For about half the people who have frontal lobe epilepsy, the cause remains unknown.
- Status epilepticus. Frontal lobe seizures, which tend to occur in clusters, might provoke this dangerous condition in which seizure activity lasts much longer than usual. Consider seizures that last longer than five minutes a medical emergency, and seek immediate help.
- Injury. The motions that occur during frontal lobe seizures sometimes result in injury to the person having the seizure. Seizures can also result in accidents and drowning.
- Sudden unexplained death in epilepsy (SUDEP). For unknown reasons, people who have seizures have a greater than average risk of dying unexpectedly. Possible factors include heart or breathing problems, perhaps related to genetic abnormalities. Controlling seizures as well as possible with medication appears to be the best prevention for SUDEP.
- Depression and anxiety. Both are common in people with epilepsy. Children also have a higher risk of developing attention-deficit/hyperactivity disorder.
Frontal lobe epilepsy can be difficult to diagnose because its symptoms can be mistaken for psychiatric problems or sleep disorders, such as night terrors. It’s also possible that some seizure effects found in the frontal lobe might be the result of seizures that begin in other parts of the brain.
Your doctor will review your symptoms and medical history and give you a physical exam. You might also have a neurological exam, which will assess:
- Muscle strength
- Sensory skills
- Hearing and speech
- Coordination and balance
Your doctor might suggest the following tests.
Brain scans. Brain imaging, usually MRI, might reveal the source of frontal lobe seizures. An MRI scan uses radio waves and a powerful magnetic field to produce detailed images of soft tissues, which make up the brain.
An MRI scan involves lying on a narrow pallet that slides into a long tube. The test often takes about an hour. Some people feel claustrophobic inside MRI machines, although the test itself is painless.
- Electroencephalogram (EEG). An EEG monitors the electrical activity in your brain via a series of electrodes attached to your scalp. EEGs are often helpful in diagnosing some types of epilepsy, but results can be normal in frontal lobe epilepsy.
- Video EEG. Video EEG is usually performed during an overnight stay at a sleep clinic. Both a video camera and an EEG monitor run all night. Doctors can then match what physically occurs when you have a seizure with what appears on the EEG during the seizure.
Over the past decade, treatment options have increased for frontal lobe seizures. There are newer types of anti-seizure medications as well as a variety of surgical procedures that might help if medications don’t work.
All anti-seizure drugs seem to work equally well at controlling frontal lobe seizures, but not everyone becomes seizure-free on medication. Your doctor might try different types of anti-seizure drugs or have you take a combination of drugs to control your seizures. Researchers are continuing to look for new and more-effective medications.
If your seizures can’t be controlled with medications, surgery might be an option. Surgery involves pinpointing the areas of the brain where seizures occur.
Two newer imaging techniques — single-photon emission computerized tomography (SPECT) and subtraction ictal SPECT coregistered to MRI (SISCOM) — can help identify the area generating seizures.
Another imaging technique, known as brain mapping, is commonly used before epilepsy surgery. Brain mapping involves implanting electrodes into an area of the brain and using electrical stimulation to determine whether that area has an important function, which would rule out surgery on that area. In addition, functional MRI (fMRI) is used to map the language area of the brain.
If you have surgery for your frontal lobe seizures, you’re likely to continue to need anti-seizure medication after the surgery, although possibly at a lower dose.
Surgery for epilepsy might involve:
- Removing the focal point. If your seizures always begin in one spot in your brain, removing that small portion of brain tissue might reduce or eliminate your seizures.
- Isolating the focal point. If the portion of the brain that’s causing seizures is too vital to remove, surgeons might make a series of cuts to help isolate that section of the brain. This prevents seizures from moving into other parts of the brain.
- Stimulating the vagus nerve. This involves implanting a device — similar to a cardiac pacemaker — to stimulate your vagus nerve. This procedure usually reduces the number of seizures.
- Responding to a seizure. A responsive neurostimulator is a newer type of implanted device. It is activated only when you begin to have a seizure, and it stops the seizure from occurring.
- Deep brain stimulation (DBS). This newer procedure involves implanting an electrode into your brain that’s connected to a stimulating device, similar to a cardiac pacemaker, which is placed under the skin of your chest. The device sends signals to the electrode to stop signals that trigger a seizure.
Lifestyle and home remedies
Some seizures might be triggered by alcohol intake, smoking and, especially, lack of sleep. There is also evidence that severe stress can provoke seizures, and that seizures themselves can cause stress. Avoiding these triggers where possible might help improve seizure control.
Some people with common neurological conditions, including seizures, turn to complementary and alternative medicine, such as:
- Herbal medicines
- Mind-body techniques
Researchers are looking into these therapies, hoping to determine their safety and effectiveness, but good evidence is mostly still lacking. There is some evidence that a strict high-fat, low-carbohydrate (ketogenic) diet might be effective, particularly for children.
Many people with epilepsy use herbal remedies. However, there’s little evidence for their effectiveness, and some can cause an increased risk of seizures.
Marijuana (cannabis) is one of the most commonly used herbal remedies for treating epilepsy, but most evidence doesn’t show that it helps. However, little data are available and research into its usefulness is ongoing. Let your doctor know if you use cannabis.
The Food and Drug Administration does not regulate herbal products, and they can interact with other anti-epileptic drugs you take, putting your health at risk. Talk to your doctor before taking herbal or dietary supplements for your seizures.
Coping and support
Some people who have epilepsy are embarrassed or frustrated by their condition. Frontal lobe seizures can be especially embarrassing if they involve loud utterances or sexual movements.
Parents of children with frontal lobe seizures can find information, resources and emotional connections from support groups to help their children and themselves. Counseling can be helpful as well. Adults with epilepsy also can find support through in-person and online groups.
Preparing for an appointment
You’ll probably first see your family doctor, who might refer you to a neurologist.
What you can do
Ask a family member or friend to come with you to the doctor to help you remember the information you receive.
Make a list of:
- Your symptoms, even those that seem unrelated to the reason you scheduled the appointment, when they began and how often they occur
- All medications, vitamins and supplements you take, including doses
- Questions to ask your doctor
Some questions to ask include:
- What is likely causing my symptoms or condition?
- Will I likely have more seizures? Will I have different types of seizures?
- What tests do I need? Do they require any special preparation?
- What treatments are available, and which do you recommend?
- I have other medical problems. How can I manage them together?
- Is surgery a possibility?
- Will I have restrictions on my activity? Will I be able to drive?
- Are there brochures or other printed materials I can have? What websites do you recommend?
What to expect from your doctor
Your doctor is likely to ask you questions, such as:
- Did you notice any unusual sensations before the seizures?
- How often do the seizures occur?
- Can you describe a typical seizure?
- How long do the seizures last?
- Do the seizures occur in clusters?
- Do they all look the same or are there different seizure behaviors you or others have seen?
- Have you noticed seizure triggers, such as illness or lack of sleep?
- Has anyone in your immediate family ever had seizures?
Source: msn.com, Mayo Clinic
April 17, 2023 | Epilepsy, Human Interest Epilepsy, Medicine, Neurology, Seizures
Epilepsy is the result of abnormal electrical activity in the brain, and the most common symptoms are sudden unusual behaviors, such as temporary confusion, staring and uncontrollable movements.
“It’s sort of an electrical storm, if you will,” says neurologist Arun Antony, M.D., director of Epilepsy at Jersey Shore University Medical Center. “And although epilepsy is most common in children, it can develop at any point in a person’s life.”
The type of seizures that occur depend on what section of the brain is affected. “The most concerning symptom is convulsions, which are dangerous because they can lead to accidents, falls and fractures,” Dr. Antony says.
“But some people with epilepsy can have staring spells and short episodes of unresponsiveness. Sometimes there are abnormal movements or sensations that can last for one to three minutes. Seizures can present in a wide variety of ways.”
How Epilepsy Affects the Brain
Epileptic seizures themselves are often brief, but can produce ripple effects across the entire brain, hindering normal brain cell activity and even killing brain cells.
Usually brain damage from epileptic seizures occurs gradually over several years. But if someone has seizures that last longer than five minutes, damage can happen much faster—over weeks.
“It’s important to prevent seizures from persisting for more than a few minutes,” Dr. Antony says. “Those who experience prolonged seizures can have cognitive issues such as memory impairment or amnesia.”
How to Reduce Effects on the Brain
Dozens of different medications are now available to treat epilepsy, and individual patients often respond very differently to each. Combining those with other approaches, including special diets, neurostimulation devices or surgery, can help control how often epilepsy patients experience seizures and how severe they are. This, in turn, can decrease any resulting damage to the brain.
People with epilepsy may also benefit from extensive electroencephalogram (EEG) testing to measure electrical activity in the brain and treat seizures at the moment they occur.
“Many lifestyle changes can help control seizures by controlling triggers,” Dr. Antony explains.
Seizure triggers can include:
- Sleep deprivation
- Certain medications—particularly antidepressants, diphenhydramine, stimulants, tramadol and isoniazid, according to the National Institutes for Health.
“I always tell patients that controlling triggers is as good as adding a few more medications to their list,” Dr. Antony says. “Leading a healthy, normal, fulfilling life with epilepsy is not only possible, but even more likely when patients actively manage their seizures and follow their doctor’s guidance.”
Source: hackensackmeridianhealth.org, Arun Anthony M.D.
April 16, 2023 | Epilepsy, Human Interest Epilepsy, News, Seizures
Seventeen men and women have been accused of falsifying documents to claim state benefits.
Seventeen people were charged in court over an alleged benefits fraud racket in which they all claimed to be suffering from epilepsy even if they held a driving license.
Some have already been convicted and others are awaiting judgment.
Suspicions were first roused last September when officials in the department of social security were vetting medical certificates submitted by a number of applicants who claimed benefits for severe disability.
I never saw these people– Neurology specialist whose signature was forged
A number of certificates bore similarities: all the applicants claimed to be suffering from epilepsy and each certificate was phrased in similar terms. Only the dates differed.
Every certificate also appeared to have been signed and stamped by the same neurology consultant.
The Income Support and Compliance Division within the Ministry for Social Policy and Children’s Rights referred the cases to the police economic crimes unit for investigation.
When questioned by the police, the consultant in question said he had never examined those patients and that neither the signature nor the stamp on the documents were his. He had not used that stamp for the past two years.
Investigators then discovered that all the applicants were in possession of a driving license, even though patients suffering from epilepsy are not meant to have one.
Compliance division managed to block most funds
Police inspectors Wayne Borg and Andy Rotin told the court that investigators had questioned the people whose names appeared on the suspicious applications before pressing criminal charges.
Seventeen men and women from various walks of life were subsequently accused of falsifying documents to claim a state benefit they were not entitled to. They were all charged recently under summons before Magistrate Gabriella Vella.
In the majority of the cases, the compliance division managed to block the application process before the funds were paid out, the court heard.
Others refunded the full amounts and others still owe varying amounts to the department.
George Cremona, director at the Income Support and Compliance Division, testified that an internal investigation was triggered when the suspicious medical certificates first caught the attention of department officials.
He said applications submitted on the department’s online platform or at any servizz.gov hub, together with the relevant medical certificate, were regularly vetted by a medical board which would then issue its recommendations.
In 2022, severe disability assistance translated into a weekly allowance of €109.52 that was payable every four weeks in advance.
Two neurology specialists whose signature appeared on the medical certificates also testified.
“I never saw these people [the accused],” the first witness stressed, confirming that the wording, the signature and the stamp on the certificates were false.
The second specialist confirmed that the wording on the documents was false and the signature was “copy and paste” of a previous version of her signature.
Admissions registered at first hearing
A number of those charged registered an admission at the first hearing.
A 60-year-old unemployed Valletta resident who had not received any funds was handed a 13-month jail term suspended for two years.
Her lawyers, José Herrera and Matthew Xuereb, said she had “unknowingly” landed in trouble, never had any previous brush with the law and had thus taken it very badly.
A 61-year-old Qormi housewife got the same punishment after her lawyers also highlighted her clean criminal record and the fact that no benefits had yet been paid when the fraudulent application was tracked down.
A 40-year-old man from Qormi was handed a one-year jail term suspended for two years after admitting to the attempted fraud. The court took note of the early guilty plea, his relatively clean criminal record and the fact that he had cooperated with investigators.
Another man who received some €2,900 in benefits was handed a two-year jail term suspended for four years after the court also took note of his early admission, his clean criminal record and the fact that all the money had been refunded.
Among those charged, others have registered an admission and are awaiting judgment while some are contesting the charges brought against them.
Source: timesofmalta.com, Edwina Brincat
April 15, 2023 | EEG, Epilepsy, Neurology, Seizures, Surgery, Technology, Treatment
An ongoing clinical trial aims to test whether digital models built using brain-scan data can help to identify where seizures originate.
Virtual models representing the brains of people with epilepsy could help to enable more-effective treatments of the disease by showing neurosurgeons precisely which zones are responsible for seizures.
The models, created using a computational system known as the Virtual Epileptic Patient (VEP), have been developed as part of the Human Brain Project (HBP), a ten-year European initiative focused on digital brain research. The approach is being tested in a clinical trial called EPINOV, to evaluate whether it improves the success rate of epilepsy surgery.
“It’s an example of personalized medicine,” says Aswin Chari, a neurosurgeon at University College London. VEP uses “the patient’s own brain scans [and] the patient’s own brainwave-recording data to build a model and improve our understanding of where their seizures are coming from”.
Epileptic seizures are brought on by abnormal brain activity, and around one-third of the 50 million people living with epilepsy worldwide do not respond to anti-seizure drugs.
“For those people, surgery is a huge game changer,” says Chari. It aims to free patients from seizures by removing parts of the epileptogenic zone — the brain region that is thought to initiate seizures.
To identify the epileptogenic zone, clinicians currently use scanning techniques such as magnetic resonance imaging (MRI) and electroencephalogram (EEG) to investigate brain activity. They also perform stereoelectroencephalography (SEEG), which involves placing up to 16 electrodes, each 7 centimeters long, through the skull to monitor the activity of specific areas for 1–2 weeks.
But SEEG captures only high-frequency currents in the brain. It doesn’t detect lower-frequency activity, which occurs in 20% of seizures. “A lot of people with epilepsy don’t have visible problems on the scan,” says Linda Douw, a neuroscientist at Amsterdam University Medical Centre in the Netherlands.
This makes the precise localization of the epileptogenic zone a considerable challenge, and affects the outcome of the surgery: the success rate at preventing seizures is currently only 50%. “The failure of the surgery is often attributed to a misidentification of the epileptogenic zone,” says Viktor Jirsa, a neuroscientist at Aix-Marseille University, France, who spoke about the project at a summit on the HBP in Marseille last week.
Jirsa and his colleagues hope that artificial intelligence (AI) can offer a more accurate way to identify the epileptogenic zone. The technique they developed involves creating a ‘digital twin’ of a person’s brain by feeding a virtual network based on the human brain with an individual’s MRI, EEG and SEEG data obtained during the presurgical routine.
The researchers then use AI-based simulations on the model to mimic brain activity and determine the zone responsible for seizures. They can also simulate the effects of performing a particular surgery and use those simulations to determine precisely which brain regions to remove, so as to stop a person’s seizures while minimizing the risk of damage. They described this approach in a January paper in Science Translational Medicine.
The current VEP model has a spatial resolution of one square millimeter, but the researchers are working to increase it by a factor of 1,000. “The consequence is that it takes 1,000 times longer,” says Jirsa, and this poses computational challenges in terms of accelerating the processing codes. “We have taken full advantage of the high-performance computing infrastructure of the HBP,” Jirsa adds.
The EPINOV trial began in June 2019, and so far, 356 people across 11 French hospitals have enrolled. The researchers will follow up with study participants for one year after their surgery and evaluate whether VEP improves surgery outcomes, says Jirsa.
“The outcome after a year is a pretty good indicator for how things are going to be in the longer run,” says John Duncan, a neurologist at the UCL Queen Square Institute of Neurology, UK. But “you have to expect that some of those people who are seizure-free for a year will not still be seizure-free at five years”, he warns.
Although the digital-twin approach holds promise, there are limitations. The pattern of seizures can change over time, and they can spread along atypical pathways. They can “come from regions that are not sampled by the SEEG”, says Douw, which means that they cannot be modelled in VEP. “There is a sort of bias in the way that the brain was sampled, [which] might decrease the value of the model in clinical practice.”
The VEP model might also recommend performing surgery on a larger area of the brain than would normally be operated on, says Duncan, and it is going to require strong evidence to convince clinicians that such risks are worth taking. “If it’s an eloquent area of the brain, say in the left temporal lobe in somebody who is left language dominant, that might carry a higher risk of impairing some kind of eloquent function like word finding or verbal memory,” he says.
“The most difficult thing is proving that these algorithms or these new models are actually clinically beneficial,” says Chari.
Enrolment in the EPINOV trial will finish this year, and analysis of the data will begin in late 2024, once the last participants complete their one-year follow-up.
The researchers hope that if it shows promise for people with epilepsy, the virtual-brain approach could be used to study other conditions, such as Parkinson’s disease and multiple sclerosis. “There are lots of diagnostic potential uses in the future of the same mechanism that we use here,” says Jirsa.
Source: nature.com, Miryam Naddaf
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