Advocacy in Epilepsy
Epilepsy and Women:
Attention to sexual health in people with epilepsy is often lacking. Sexual dysfunction, however, is a side effect of epilepsy and the medications that treat it.
Although not fully understood, epilepsy can also cause endocrine disorders that negatively impact the reproductive system, leading to infertility. People with epilepsy need to talk to their healthcare providers about ways to prevent sexual problems when diagnosed with the condition.
This article addresses the cause of sexual problems in people with epilepsy and how to treat them.
Sexual problems like decreased libido or inability to orgasm are more likely to occur in people with epilepsy compared to those who don’t have the disease. Because the brain is responsible for both epilepsy and sexual behavior, there is a connection between the two, which includes:
Not only do seizures, hormones, and psychological issues diminish sexual function, but the medications that treat epilepsy also impact sexual health. Some anti-epileptic drugs (AEDs) cause elevated liver enzymes that lead to suppressed sex hormones. Other AEDs have a depressive effect on the brain that can leave people feeling sedated and uninterested in sex.
AEDs known for increasing liver enzymes and decreasing sex hormones include:
Speak to your healthcare provider about how anti-epileptic drugs could affect your sexual health.
Some AEDs effectively treat seizures and have minimal sexual side effects. Changing medications may be an option depending on the type and severity of the seizure disorder. AEDs that have a decreased implication for sexual dysfunction are:
If switching AEDs doesn’t work, you may be able to take medications that help treat sexual dysfunctions. These include:
Reducing the dose of the AED, building up a tolerance to the medication, and taking the drug after sex may improve sexual ability. It may take various approaches to find the best solution for improved sexual health, but keeping an open dialogue with your healthcare provider is essential.
Sexual problems in people with epilepsy can affect up to 60% of men and 50% of women. Although men and women with epilepsy may experience decreased libido, other sexual problems manifest differently in each gender.
In addition to decreased testosterone levels and the side effects of AEDs, performance anxiety can cause the following sexual problems in men with epilepsy:
Endocrine disorders, low levels of female hormones, menstrual irregularities, and psychiatric conditions have been linked to sexual and reproductive dysfunctions in women with epilepsy.
Epileptic women often experience the following sexual problems:
In addition, endocrine disorders that affect fertility in women with epilepsy are:
Treating sexual problems associated with epilepsy begins by telling your healthcare provider. Various methods can help improve sexual dysfunction in people with epilepsy. Some options that may help include:
People with epilepsy often experience sexual problems. Hormonal abnormalities, endocrine disorders, fear, and side effects of treatment may lead to sexual dysfunctions. Depression, loneliness, and anxiety can occur if sexual health is not seriously addressed. There are various methods available for improving sexual impairments in people with epilepsy. Talk to your healthcare provider about ways to prevent sexual problems if you have been diagnosed with epilepsy.
Sexual health plays a valuable role in the quality of life; many people feel unsatisfied and disconnected when it’s poor. If you’ve been diagnosed with epilepsy and are struggling with libido, the ability to orgasm, infertility, or depression, you are not alone. Speaking to your healthcare provider about these symptoms so they can help you feel better is essential.
Source: verywellhealth.com, Serenity Mirabito, Nicholas R. Metrus
About three million people in the United States have epilepsy, including about a million who can’t rely on medication to control their seizures.
For years, those patients had very limited options. Surgery can be effective, but also risky, and many patients were not considered to be candidates for surgery.
But now, in 2023, advancements in diagnosing and treating epilepsy are showing great promise for many patients, even those who had been told there was nothing that could be done.
One of those patients visited Dr. Jerry Shih at the Epilepsy Center at UC San Diego Neurological Institute, after getting a bleak prognosis a few years earlier.
“When I saw him, I said, ‘You know what, we’re in a unique situation now where we have some of the newer technologies that were not available in 2010.” he says. “We knocked out that very active seizure focus. And he has subsequently been seizure free.”
Using precise lasers, microelectronic arrays and robot surgeons, doctors and researchers have begun to think differently about epilepsy and its treatment.
“If you think about the brain like a musical instrument, the electrophysiology of the brain is the music.” says Dr. Alexander Khalessi, a neurosurgeon at UCSD. “And so for so long, we were only looking at a picture of the violin, but now we’re able to listen to the music a little bit better. And so that’s going to help us understand the symphony that makes us us.”
Today on Short Wave, host Aaron Scott talks with NPR science correspondent Jon Hamilton about these advances in treating epilepsy. He explains why folks should ask their doctors about surgery — even if it wasn’t an option for them a few years ago.
Transient loss of consciousness (TLoC) is loss of consciousness with complete recovery. It is commonly described by the patient as a blackout.TLOC with postural failure due to cerebral global hypoperfusion is termed as syncope.
The most common causes of syncopal TLOC include:
(1) cardiogenic syncope (cardiac arrhythmias, structural cardiac diseases, others)
(2) orthostatic hypotension (due to drugs, hypovolemia, primary or secondary autonomic failure, others)
(3) neurally mediated syncope (cardioinhibitory, vasodepressor, and mixed forms). Rarely neurologic disorders (such as epilepsy, transient ischemic attacks, and the subclavian steal syndrome) can lead to cerebral hypoperfusion and syncope.
Nonsyncopal TLOC may be due to neurologic (epilepsy, sleep attacks, and other states with fluctuating vigilance), medical (hypoglycemia, drugs), psychiatric, or post-traumatic disorders.
Situational syncope should be diagnosed when there are no features from the initial assessment that suggest an alternative diagnosis and syncope is clearly and consistently provoked by straining during micturition (usually while standing) or by coughing or swallowing. If a diagnosis of uncomplicated faint or situational syncope is made, no further immediate management is required.
Patients with TLoC who do not have a firm diagnosis of uncomplicated faint, situational syncope, orthostatic hypotension, or symptoms suggestive of epilepsy should have a specialist cardiovascular assessment by the most appropriate local service.
The aim is to categorise the TLoC as either caused by suspected structural heart disease, suspected cardiac arrhythmia, suspected neurally mediated, or unexplained.
The following tests are likely during specialist assessment:
An ambulatory ECG is required to diagnose a suspected cardiac arrhythmia. The type chosen will depend, in particular, on the frequency of TLoC and will require, for example, 24- or 48-hour monitoring or external or implantable event recorders.
People with structural heart disease may have several mechanisms for syncope and so should have investigations for arrhythmia, as well as consideration of orthostatic hypotension and neurally medicating syncope, in addition to cardiac imaging.
TLoC during exercise requires urgent (within 7 days) exercise testing, unless there is a possible contraindication (such as suspected aortic stenosis or hypertrophic cardiomyopathy). The patient should refrain from exercise until further assessment.
For people with suspected carotid sinus syncope and for those with unexplained syncope who are aged ≥60 years, carotid sinus massage is the first-line investigation.
For people with suspected vasovagal syncope for whom recurrent episodes of TLoC adversely affect their quality of life or represent a high risk of injury, a tilt test is recommended. This will assess whether the syncope is accompanied by a severe cardioinhibitory response (usually asystole).
An ambulatory ECG is recommended for all people with unexplained syncope (including after negative carotid sinus massage test in those for whom this is appropriate). A tilt test is not recommended before ambulatory ECG.
Treatment of TLOC is important for different reasons: (1) risk related to the underlying cause of TLOC; (2) risk of injuries; (3) risk related to TLOC in some situations (e.g., driving, swimming); (4) emotional stress of patients.
Management of TLOC requires workup to identify the cause and management of underlying disease.
Orthostatic hypotension can be treated by non-pharmacological and pharmacological interventions. Non pharmacological interventions include compression garments, neuromuscular stimulation, physical counter-maneuvers, aerobic or resistance exercises, sleeping with head tilted up, increasing fluid and salt intake, and timing and size of meals.
Drugs that may be used to treat orthostatic hypotension include midodrine (Orvaten), droxidopa (Northera), fludrocortisone or pyridostigmine (Mestinon, Regonol).
Situational syncope is usually benign, and simple strategies such as increasing hydration, salt, improving awareness of warning symptoms, and taking early evasive action to abort syncope, and getting down to a seated or lying position rapidly, can usually be enough to significantly reduce your symptoms.
Cardiogenic and neurogenic syncope require evaluation by specialist and specific treatment based on the underlying cause.
Dr Hamed Bashir is a valley-based Cardiologist
DISCLAIMER: The views and opinions expressed in this article are the personal opinions of the author.
The facts, analysis, assumptions and perspective appearing in the article do not reflect the views of GK.
Source: greaterkashmir.com, Dr. Hamed Bashir; Art by Haley Manchon
In some cases, dehydration can cause seizures. This includes triggering epileptic seizures in people with preexisting epilepsy. Additionally, it may provoke singular seizures in people without epilepsy.This article discusses how dehydration may contribute to different kinds of seizures. It also explains when to seek medical help for dehydration and seizures and how to prevent dehydration-related seizures.
In some cases, dehydration may cause seizures.
This is because seizures result from changes in brain function due to illness, injury, or structural differences. Severe dehydration can affect brain function and trigger seizures.
Below are some explanations of how dehydration may contribute to different seizures.
To understand how dehydration may cause seizures, it is important to know about the different seizure types. These include:
Being dehydrated is one possible cause of electrolyte imbalances. This refers to changes in the balance of minerals known as “electrolytes” in your body. Electrolytes have many important roles and contribute to nutrition, waste management, and organ function. Due to this, electrolyte imbalances can significantly impact health, including the function of the brain.
As a result, sometimes severe dehydration leading to electrolyte imbalances may cause a provoked seizure as a symptom.
Dehydration alone is not a recognized cause of epilepsy. This means that it will not cause epilepsy to develop in someone who does not already have the condition.
Epilepsy occurs due to significant damage or structural differences in the brain. Multiple factors may contribute to its development. These factors can include:
However, dehydration and related electrolyte imbalances may trigger a seizure episode to come about in someone who already has epilepsy. In fact, dehydration and not taking in enough fluids is a common seizure trigger, according to the Epilepsy Foundation charity.
As a result, mild dehydration and electrolyte imbalances may cause a seizure in a person with epilepsy. By contrast, it takes severe dehydration and electrolyte imbalances to cause provoked seizures in a person without epilepsy.
Not all seizures and cases of dehydration are medical emergencies. However, some severe cases of dehydration and its complications, such as seizures, may require urgent medical care.
Call 911 or seek emergency care if you have a seizure that you believe could be related to dehydration, electrolyte imbalances, or other severe illness.
It is also advisable to seek urgent advice from a doctor if you or someone you care for experiences any of the following dehydration symptoms with or without a seizure:
The Centers for Disease Control and Prevention (CDC) also recommend calling 911 for any seizures in the following circumstances:
The precise outlook of dehydration-related seizures can depend on the seizure type you experienced and many other factors, such as:
The World Health Organization also estimates that as much as 70% of people with epilepsy could be seizure-free with effective treatment.
Additionally, dehydration that is severe enough to trigger seizures may present a risk of other complications to health, such as coma. As a result, it is important to seek urgent care. Prompt and effective treatment can help recovery and reduce further risks to health.
For individualized advice regarding outlook, contact your doctor.
It may not be possible to stop all seizures from occurring, especially if you have a seizure disorder such as epilepsy.
However, drinking enough every day can help reduce dehydration as a risk factor for triggering provoked and epileptic seizures.
The United States government health resources do not recommend a specific level of how much you should drink per day. This is because the appropriate amount to drink can vary slightly per individual depending on personal factors, such as age, body size, and health.
As a general guide for healthy adults, the National Academy of Medicine recommends that adults take in between 2.7 and 3.8 liters of fluid daily. However, this is a very rough estimation and includes water needed from food. As a result, the amount you benefit from drinking may be slightly lower or otherwise vary.
Additionally, it is important to take particular care to remain hydrated if you experience any risk factors for dehydration, such as:
Dehydration can cause some types of seizures. This includes provoked seizures that occur as a symptom of illness, such as dehydration or related electrolyte imbalances.
Dehydration is not known to cause epilepsy in someone who does not already have the condition. However, dehydration and electrolyte imbalances can trigger seizures in people who already have epilepsy.
Seek emergency care for any symptoms of severe dehydration or seizures.
Source: healthgrades.com, Heidi Moawad M.D., Alex Prosser
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:
Many seizures are not medical emergencies and can be manageable with treatment. However, in some cases, seizures can cause brain damage or have lasting effects on health.This article discusses how seizures can cause brain damage. It also explains how to protect the brain and prevent damage, and answers some frequently asked questions.
Seizures can vary by severity, brain activity, and health effects. Some types are more likely to lead to brain damage.
Brain damage from seizures may occur due to:
Prolonged seizure episodes are known as status epilepticus. Clinicians define status epilepticus as seizure activity in the brain that lasts for 5 minutes or more. Without treatment, these episodes can lead to brain or other organ damage.
Epileptic seizures are unprovoked and occur due to spontaneous, uncontrolled electrical activity in the brain. Some cases of epilepsy may contribute to brain damage.
Provoked seizures occur when an illness or injury triggers a single seizure episode. These include febrile seizures, which children can experience during a fever.
According to the National Institutes of Health (NIH), there is no evidence that short febrile seizures can cause brain damage. However, researchers have linked febrile seizures to an increased likelihood of developing epilepsy.
Some provoked seizures can also lead to status epilepticus. This suggests that provoked seizures may have an affect on brain health. Although, the overall risk is still small.
Below are some of the ways epileptic seizures may cause damage to the brain.
Seizures can cause the death of nerve cells in the brain, also known as “neurons.” Neurons transmit electrical and chemical signals and help carry out functions that support life. Neuronal death due to seizures is more likely if the episodes are repetitive.
Areas in the brain where damage can occur due to seizures include:
Significant neuronal death may also contribute to the development of neurodegenerative diseases, such as Alzheimer’s disease.
According to a 2018 study, epilepsy may cause structural differences in the brain. In the study, researchers noted brain differences in people with epilepsy, such as volume loss and enlargement of certain areas. However, they are not certain about the cause of these differences.
Brain differences in people with epilepsy may be due to a variety of factors, such as:
The hippocampus is the part of the brain that helps process memory. Researchers suggest that epileptic seizures may decrease hippocampal volume.
Additionally, a 2016 study in rats suggests that brain activity similar to human seizure activity may impair memory consolidation. Memory consolidation is the process by which short-term memories are stored as long-term memories.
While there is some evidence linking seizures to memory impairment, further human research is needed to confirm these effects.
Atrophy refers to the wasting or weakening of body tissues and organs.
A 2019 study looked at MRI scans of the brain in people with epilepsy. Researchers found that 76.8% of participants with focal epilepsy showed progressive atrophy in parts of the brain. This effect was separate from typical changes due to aging.
A 2020 study suggests that epileptic seizures can cause structural and functional changes in the brain that resemble aging.
In the study, researchers used MRI scans to examine brain structure in people with temporal lobe epilepsy. They found that participants’ brains appeared about 6.6 years older, on average. Additional cognitive testing revealed the functional brain age of participants to be about 8.3 years older than their actual age.
Some seizures can occur as a result of existing brain damage. This can make it difficult to determine the extent of any damage caused by a seizure.
Even though seizures have been linked to brain damage, more research is needed to confirm these effects. Researchers are also working to understand the long-term effects of brain damage on overall health.
Treatment may help reduce the risk of complications from seizures. Also, not every person with epilepsy will experience the same presentation or progression of symptoms.
Other factors that may affect your outlook with epilepsy include:
Talk with your doctor for advice on outlook and treatment for your specific condition.
Effective treatment can help prevent complications due to epileptic seizures. It is important to follow any treatment plan your doctor has prescribed. Contact your healthcare professional if you have questions or are unsure about your treatment.
Additionally, having others around you who are familiar with first aid for seizures can help you stay safe during an episode. They can seek medical help, if necessary, and reduce your risk of complications.
Call 911 for any seizure episode that lasts 5 minutes or more. This is a symptom of status epilepticus.
The following frequently asked questions were reviewed by Nancy Hammond, M.D.
There is no set amount of seizures that cause brain damage. Research suggests that damage may be from chronic or multiple seizures, meaning the effect may be cumulative.
However, one seizure alone may cause brain damage if it becomes status epilepticus or results in a secondary injury.
Like other epileptic seizures, some cases of absence seizures may cause brain damage or other complications.However, the outlook for absence seizures can be positive. Childhood absence epilepsy can go away by adulthood, and others may live seizure-free with treatment.
In some cases, seizures can cause brain damage, such as brain aging or neuronal death. However, many people who experience mild epileptic or provoked seizures do not develop significant complications.
Researchers are not yet clear about how or why brain damage occurs with seizures. Current evidence suggests it may be a long-term effect of having a seizure disorder. Brain damage may also result from a prolonged, single seizure episode.
Contact your doctor about optimizing your treatment and reducing your risk of complications.
Source: healthgrades.com, Jenna Sager, Nancy Hammond
More than one in five people in Hong Kong suffer from neurological disorders, which range from migraines and depression to epilepsy. Such conditions have typically been treated with medications, but they are not always effective – for example, anti-epileptic drugs help control seizures in around seven out of 10 patients.
Now, innovations in medical technology offer hope with easy-to-use and effective treatments. Hong Kong start-up Neuropix Company Ltd has developed a wearable wireless neurostimulation device that helps manage neurological disorders by rebalancing patients’ brain chemistry.
In 2021, Neuropix was named one of the award winners in the Open Group of the City I&T Grand Challenge, organised by the Innovation and Technology Commission (ITC) together with Hong Kong Science and Technology Parks Corporation (HKSTP). The competition seeks creative solutions to transform Hong Kong through innovation and technology, with entries open to primary schools, secondary schools, universities and the general public, both locally and worldwide.
Neuropix, which won the Innovation Award, has since seen its idea evolve into a real-life product. This new product provides a treatment called tVNS – which stands for transcutaneous vagus nerve stimulation – and consists of a medical device with wireless electrodes to be worn in the ear. It uses electrical pulses to activate small nerve fibres inside the ear, and those in turn stimulate the vagus nerve, a key component of the nervous system that transmits important sensory and functional signals between the brain and body.
Neurological disorders often involve an imbalance in these signals, which are associated with symptoms such as epileptic seizures. The tVNS treatment helps reset the balance of neurotransmission in the brain.
Dr Daniel Ko, CEO and founder of Neuropix, explains: “The tVNS device is a non-invasive therapeutic application which delivers specific electrical pulses to key nerve fibres, which help rebalance brain chemistry and ease disease symptoms over time.”
The clinically developed tVNS treatment offers a solution for people who have been living with drug-resistant neurological conditions. It also helps patients who are using medications to manage their condition, as tVNS can supplement drug treatments without major side effects.
Neuropix is currently exploring further use of tVNS as a potential treatment option for neurodegenerative disorders associated with ageing, such as Alzheimer’s disease and Parkinson’s disease.
Ko, a neuroscience specialist, found his initial inspiration for the device while working in the UK, France and mainland China with some of the global pioneers in neurostimulation. The earlier treatments he learned about required surgery to implant devices that would electrically stimulate the nerve fibres.
However, not every patient was suitable for such surgery, and many did not want to undergo an invasive procedure. In addition, the existing neurostimulation devices were rather large and had wires attached, which could be burdensome for patients. So Ko wanted to find a way to make neurostimulation treatment more accessible to people on a mass-market level.
The Neuropix team focused on designing a smaller, wireless and portable medical device. “We developed a non-invasive, wearable application, which still delivers electrical pulses to key fibres, but it’s very easy to use, just like an earbud,” Ko explains.
The company’s participation in the City I&T Grand Challenge has played an essential role in taking the design from a winning concept to reality. The support that Ko and his team have received from the competition includes a dedicated account manager, who helped keep their work on track from the prototyping phase through to product development and testing their device with users.
“The structure of the programme really helped to propel our development. We were able to focus our ideas and evolve our product to the next level,” Ko says.
The competition also provided opportunities for the Neuropix team to develop skills such as business pitching. And as one of the winners, the company received funding from the ITC, as well as access to R&D resources at HKSTP and mentorship from professionals to help scale production of the tVNS device for mass-market adoption.
“It has been a turning point for our company,” Ko says of the experience.
He sees the City I&T Grand Challenge as a prime example of Hong Kong’s thriving innovation and technology sector. “Hong Kong’s start-up ecosystem is very vibrant,” Ko says. “There are many high-level experts within reach, and also support for start-ups in developing ideas, innovating and achieving their goals.”
Source: scmp.com, Nicky Burridge
The new eDiary solution optimizes data quality and simplifies epilepsy trial participation
Signant Health, the leader in evidence generation for modern clinical trials, introduced today a novel electronic diary (eDiary) data capture solution designed to simplify the experience for patients and research sites participating in epilepsy trials while ensuring robust outcome assessment data to support trial endpoints. Developed in collaboration with The Epilepsy Study Consortium (TESC), the new patient-reported outcome measure offers clinical research sponsors and organizations a standardized solution to capture common seizure-data elements with high-quality data.
Epilepsy-related protocols often require study teams to collect data about patients’ daily and episodic seizure events, typically captured using paper-based or non-standardized electronic diaries. The new electronic seizure diary solution, consisting of two pre-designed, configurable eDiaries, enables sponsors to harness the benefits of electronic data collection and standardize their measurement approach to the assessment of seizure events.
For example, research teams can adapt the eDiary’s features to accommodate specific study requirements while maintaining a common data set structure, thus ensuring full adherence to protocol and regulatory requirements as well as promoting participant adherence and retention.
“We chose Signant as a partner based on their considerable experience developing complex eDiaries and conducting epilepsy trials,” said Jacqueline French, President and Founder of The Epilepsy Study Consortium. “This new electronic seizure diary combines scientific best practice with clinical requirements to ensure capture of robust and relevant clinical outcome assessments.”
In its mission statement for the diary development initiative, The Epilepsy Study Consortium outlined several unique challenges associated with clinical data capture in epilepsy trials that it sought to address, including differing needs for pediatric and adult populations, questions about the frequency of data collection, and methods for addressing data changes or corrections.
“Until now, there hasn’t been a standardized seizure diary,” noted Lew Fredane, M.D., Signant’s Clinical Vice President, Neurology, and therapeutic-area leader. “We have deployed electronic data capture solutions for more than 50 epilepsy trials, so we knew that it would be critical to accommodate the unique needs of epilepsy trial participants who include not just adult and pediatric patients, but their caregivers and study partners as well.”
Signant’s scientific experts and software development architects worked closely with TESC and partners for over a year to ensure the resulting eDiary solution streamlines the participation experience for everyone involved in epilepsy trials, offers a link between at-home patients’ experience and clinical monitoring to facilitate prompt intervention as needed, and generates high-quality data essential for meeting regulatory requirements.
The electronic seizure diary, available now, can be deployed on the company’s flagship Signant SmartSignals eCOA platform.
About the Epilepsy Study Consortium
The Epilepsy Study Consortium (TESC) is a group of scientific investigators from academic medical research centers who are dedicated to accelerating the development of new therapies in epilepsy to improve patient care. The organization’s goals include building a partnership between academics, industry and regulatory agencies and optimizing clinical trial methodology in order to responsibly speed new treatments to patients. Visit www.epilepsyconsortium.org to learn more.
About Signant Health
Signant Health is the evidence generation company. We are focused on leveraging software, deep therapeutic and scientific knowledge, and operational expertise to consistently capture, aggregate, and reveal quality evidence for clinical studies across traditional, virtual, and hybrid trial models. For more than 20 years, over 400 sponsors and CROs of all sizes – including all Top 20 pharma – have trusted Signant solutions for remote and site-based eCOA, eConsent, RTSM, supply chain management, and data quality analytics. Learn more at www.signanthealth.com.
Source: prnewswire.com, Signant Health
A woman has donated paintings to the hospital that cured her epilepsy giving her “freedom” again.
Helen Butler suffered up to 25 seizures a week and was left with horror injuries including a broken nose and collarbone because of her fits.
The 42-year-old battled epilepsy since she was just nine-years-old before undergoing brain surgery at The Queen Elizabeth Hospital.
Since then, she has been seizure free for over four years and has completed major milestones like passing her driving test.
Now she has donated colourful inspirational paintings to the hospital and even got one of her designs tattooed on her arm.
Helen told the Glasgow Times: “Since the operation, I feel I have got so much freedom back and can make up for lost time.
“I can drive now and I’m not tired all the time so I can do my paintings. It was hard before because I could have up to 25 seizures a week.
“I painted the seahorse about a month after the surgery and gave it to my neurosurgeon during my first check-up.
“Then I got the tattoo of the painting on my arm, it was in a way a tribute to my surgery and reminds me of my new life now.
“I decided to donate more paintings to the hospital because I wanted to tell my story in a positive way and say thanks. I hope it helps other people.”
Helen, from Argyll, had suspected meningitis at 11 months old which caused scar tissue on the brain triggering her seizures at nine.
Then in her 20’s the seizures grew more aggressive before she was suggested for surgery in 2015 which involved removing part of her brain.
Helen underwent the procedure on July 24, 2018, and has since been seizure free and is now focusing on her paintings.
The hospital has thanked her for the stunning designs and hopes they inspire patients and staff in the future.
Doctor Russell Hewett, consultant neurologist with a special interest in epilepsy, was thrilled to receive Helen’s paintings and hopes they inspire others.
He said: “Here in Glasgow we are able to put electrons inside the brain and work out where the seizures are coming from, from there we can remove that part.
“We can’t do it for everyone but fortunately Helen was a candidate so now to see her doing so well and even being seizure and medication free is incredible.
“It is so brilliant to get her paintings, it adds some colour to the hospital and will inspire staff and patients.
“Helen gave me a mug with her painting on it which I use all the time, it reminds me of what I do and how important it is.”
Helen added: “I started painting about a month after my operation.
“I went to art college when I was younger and used my paints that I haven’t used for 18 years.
“It feels so good to give a positive story to other people going through the surgery route.
“The operations sound really daunting but since I have been through that journey I can show other people through my art that it can be a good thing.”
Source: uk.news.yahoo.com, Kristy Feerick
Elizabeth says she has woken up “covered in blood” after biting the inside of her mouth
A North London mum with epilepsy claims she has waited more than a year for her landlord to fix her home and says the stress caused by delays has made her have more seizures.
Elizabeth Gunthorpe, 52, who has lived at the property on Innovation Close in Alperton for 25 years, says she feels as though she is “going round in circles” trying to get the housing association, Notting Hill Genesis (NHG), to complete the works. She said: “It’s been a year of continuous drama and I’m not the only tenant on this close that’s dealing with it. Since last January we have had three housing officers. every time a new officer starts you have to repeat the whole process.”
The mum of three, who is registered disabled and listed as a vulnerable tenant, says she has been complaining to NHG since January 2022 about the issues. She claims there’s moss growing on the roof as broken guttering has caused water to be directed on the tiles.
The guttering is also blocked by “flowers growing out of [pipes]”, a wooden back door and window has rotted, a garden fence panel needs replacing, and she has requested that kitchen units be lowered so she can reach them.
Elizabeth said: “Last year it was phone call after phone call and the housing officer wasn’t contacting me. I’ve given up on chasing now as I have no other option, my health is important at the moment.
“My seizures have increased, [the doctor] has had to give me extra medication for what I already take. I am waking up covered in blood, my face is covered in blood, and that’s because I am biting up all the inside of my mouth. I am sleeping with a mouth guard now, It’s all the stress.”
She says that, during December’s freezing weather, she didn’t have her heating on due to the gaps in the front and back doors. She said: “I didn’t bother turning it on because the sealant all round the front door is gone and I have been complaining for months. You can feel the breeze coming through the house.”
During heavy rain, water allegedly forms underneath the back door, leading the frustrated resident to conclude that it “won’t be long” before damp and mould starts to appear. Elizabeth said: “My home is my sanctuary. I’m not asking them to come in here and do miracles, just their job.
“I’m tired of it, it’s taking a toll on me emotionally and physically. They offered me £250 as a goodwill gesture, I told them to keep it. I have spent that on phone calls alone.”
A spokesperson for NHG said that a surveyor has been to look at the condition of the back door and their opinion was that it “can be repaired and doesn’t need replacing”. They claim a contractor has been organised to carry out the repair work “on several occasions” but “the resident has declined”. In response, Elizabeth said: “The wood is rotten, how do you fix rotten wood? When you touch it the wood automatically starts flaking and peeling.”
Representative for Alperton ward, Cllr Anton Georgiou, said that when he first met Elizabeth last year she was “already exhausted” from dealing with the problems. He claims NHG has “consistently failed to address issues” at her home.
He added: “Unfortunately, Elizabeth has to contend with complex medical conditions and the stress that this situation has caused over many, many, months is making them even worse. That is simply not right.
“I implore NHG to prioritise the required works at Elizabeth’s property, to offer compensation for the trauma this has caused and to start treating all their residents with the level of care and empathy that they rightly expect and deserve.”
The NHG spokesperson said: “A surveyor has been to look at the condition of the resident’s back door. Her opinion is that the door can be repaired and doesn’t need replacing. We’ve organised a contractor to attend to carry out the repair on several occasions, but the resident has declined. We will continue to try and resolve this issue.
“The fencing has been repaired but we recognise the resident is unhappy with the aesthetics. As such we will review whether any changes can be made to the panel at the end of the garden.
“A contractor attended and cleared the guttering at the property in October 2022. At this time no broken guttering was identified. We recently raised a new job for a contractor to attend to inspect and fix any broken gutters if necessary. We’ve also recently raised a repair for a contractor to tackle the moss on the roof of the property. We are in regular contact with the resident and will work with her to get these repairs scheduled as soon as possible.”
Source: mylondon.news, Grant Williams
Epilepsy can be caused by a mutation in a protein that is important for transporting substances in the brain, a Japanese-Saudi Arabian research team announced in an academic journal last month.
There are estimated to be around one million patients with epilepsy in Japan, and around 50 million throughout the world. The condition is understood to have a range of causes, such as injuries, drug side effects, and other disorders, but the mechanisms for its onset were not understood in detail.
The research team from the University of Tokyo and King Abdulaziz University carried out a genetic analysis of pediatric epilepsy patients. In their findings, they identified a mutation in the KIF4 protein, a type of protein known as a molecular motor for its role in transporting materials within cells. KIF4 is found particularly within the brain and nerve cells.
Using genetic engineering, the team produced mice with the same mutation. The mutant mice exhibited severe seizures, a symptom of epilepsy. While looking into their brain tissue and nerve cells, they found changes also seen in human patients, such as abnormally shaped nerve cells and lowered activity of a protein that is critical for maintaining brain function. They concluded that changes to the KIF4 protein are one cause of the condition.
Additionally, the researchers identified a substance that improves epilepsy symptoms in the mice with mutations. Nobutaka Hirokawa, who researches molecular cell biology at the University of Tokyo and led the study, said, “We don’t know how prevalent this genetic mutation is among patients, but now that we understand part of the mechanism that causes the condition and have discovered a substance related to its amelioration, our findings could be used to develop new therapeutic drugs.”
The research was published last month in the online version of the Journal of Cell Biology, a U.S. academic paper.
Source: mainichi.jp, Yasuyoshi Tanaka
Diagnosis can be a postcode lottery and is hampered by general understanding of epilepsy – only 3 in 100 sufferers are triggered by flashing lights
The first time it happened was in July. I was sitting at my desk, sifting through a swamped inbox when my mind slipped into a feeling of déjà vu. Déjà vu is unnerving at the best of times, but this was prolonged; all-consuming. It felt like I was remembering a half-forgotten dream while wrestling to establish why my desk – where I spent hours each day – was now an agent of dread. Pounding heart, constricted lungs and an icy sensation slithering in my stomach: the hallmarks of a panic attack.
The initial fear and panic subsided as quickly as it arrived. But, throughout the course of that one summer day, I experienced 30 more episodes. An emergency GP appointment followed and I left with a packet of diazepam and a diagnosis: generalised anxiety disorder.
After the diagnosis, I tried every trick in the book to manage my new “panic attacks”: meditation, exercise, healthy eating, plenty of sleep, regular exercise, and a self-referral for cognitive behavioural therapy (CBT) through the NHS.
While I felt less stressed, the déjà vu feeling and panic attacks continued regardless. It was only when I stumbled upon an online epilepsy forum with a discussion about my exact symptoms that I began to realise my “anxiety” might be something else altogether.
Armed with this information, I returned to my doctor and requested a neurology referral. That’s how I found myself, in December, in a stiff-backed hospital chair, face-to-face with a neurologist, digesting my new reality: I had temporal lobe epilepsy. “I wish I had a medical student here – you’re a textbook case,” my doctor affirmed, before reeling off activities that I could no longer do, deemed too high risk, like driving, taking a bath and standing on a chair.
I almost laughed at how surreal it all felt. But underneath the shock of a life-changing diagnosis, relief was blossoming. This was the culmination of six months of disconcerting symptoms and misdiagnosis. It was a definitive answer.
Since the seizures began, I’d felt like something unexplained had wrested charge of my brain cells. Unbeknown to me, the electrical rhythms of my brain had fallen out of kilter, dropping their steady, reassuring beat for more unreliable pulses.
The symptoms I’d been experiencing were focal aware seizures, disruptions in the brain’s signals which cause uncontrollable sensations, movements and feelings. Often, they precede a tonic-clonic seizure – the convulsive loss of consciousness that represents much of the general public’s understanding of epilepsy. But that didn’t happen in my case.
Around 600,000 people in the UK have epilepsy and it can start at any age although the NHS says it usually starts in children or people over 60. “In most cases, it’s not clear why this happens,” it says.
Although genes are thought to play a part – one in three people have a family member with epilepsy – it can also be caused by damage to the brain such as a stroke, infection or tumour, or a head injury. Temporal lobe epilepsy, which I have, can be managed with medication in two-thirds of people; for the rest, diet changes and surgery can be an option.
Although epilepsy is a common condition, many – like me – may initially go undiagnosed – especially if they are experiencing subtler symptoms like migraines, heart arrhythmias, vertigo or fainting spells.
Getting a formal diagnosis can be challenging, obstructed by a widespread ignorance of epilepsy’s myriad forms. For example, only three in 100 people with epilepsy have photosensitive epilepsy, but flashing lights are by far the most commonly publicly known trigger.
Problems in securing diagnosis can also arise at a primary care level. “Lack of recognition or underdiagnosis of epilepsy is more common in people with only symptoms caused by focal epilepsy,” explains Andy Nicolson, medical director of The Walton Centre, the UK’s only specialist trust dedicated to neurosciences.
In these forms of epilepsy, which include temporal lobe, seizures originate in one hemisphere of the brain and can be confused with panic attacks or migraines. As a result, “it’s not unusual for people to have a delay in diagnosis for a number of years,” Nicolson explains.
On the Reddit epilepsy thread, people from across the world recount their experiences of misdiagnosis. These range from serious mental health conditions to detention in psychiatric wards. Many stories feature a generalised anxiety disorder misdiagnosis, while some tell of delayed diagnoses of up to 20 years.
Gus Baker, a retired chartered consultant clinical neuropsychologist, secretary general of the International Bureau for Epilepsy and patron of The Brain Charity, says the likelihood of reaching a quick diagnosis of epilepsy can also be stymied by your location. “You’d expect most GPs to be well advised and understand epilepsy to a fair degree,” he says. However, there’s “a postcode lottery – and depending on where you live and who you see, this affects whether you get an accurate diagnosis.”
So if your GP has a good relationship with local neurology services, or you live within an NHS Trust with a specialist epilepsy centre, then referral may be quick; if not, you could face a lack of understanding – and a far longer wait to be diagnosed. The six months it took for mine is markedly faster than many others experience.
For 31-year-old Sarah Barker-Nunn from Romford in Essex, it took three years for her diagnosis of juvenile myoclonic epilepsy, which presents as uncontrolled spasms and jerks in your limbs.
Her first episode occurred at age 14, and was followed by tonic-clonic seizures. Her GP’s initial diagnosis was “bizarre”, she recounts. “They told me I wore too much mascara and the headaches I was experiencing were from my eyes being too heavy.” A diagnosis of migraines was given, before being revised as chronic fatigue and, subsequently, generalised anxiety disorder.
The experience took a huge toll on her life. “I struggled a lot at school because I was tired,” she explains and the extreme fatigue caused by her condition led her to drop three-quarters of her GCSEs. Finally, at the age of 17, she received a definitive epilepsy diagnosis.
Barker-Nunn remains frustrated about the length of time it took – and the misdiagnoses she received along the way. “I’m so annoyed with the NHS and the school system because they wouldn’t believe me,” she says. She is keen to raise awareness around misdiagnoses and is grateful for the support of neurologists and epilepsy nurses, who she says are “worth their weight in gold”.
What I’ve learned from my experience is that listening to your body – and trusting what it tells you – can be a crucial step in an accurate medical diagnosis. Baker agrees, recommending Epilepsy Action’s helpline for those concerned they might have epilepsy to find support and guidance around the types of questions they should be asking their GP.
Having the confidence to advocate for a neurology appointment has changed my life. The medication lamotrigine is managing my epilepsy and it’s unfathomable to think about the alternative: the distress of the seizures, or the risks posed to myself and others if I was still able to drive. I don’t blame the healthcare system for my misdiagnosis – I’m just relieved to have now found answers, support and the prospect of living life seizure-free.
An epileptic seizure is a period of uncontrolled electrical activity in the brain.
It can cause a range of outward symptoms, including: convulsions, minor physical signs, thought disturbances or a combination of symptoms.
The type of symptoms and seizure depends on the location in the brain of the abnormal electrical activity, the cause of the electrical disturbance and other factors such as the patient’s age and general health.
In 70 percent of seizure cases, it is not possible to find a cause for epilepsy, although genetic factors are likely to play a role.
An epileptic seizure is a period of excessive and abnormal brain activity.
Visible symptoms may vary from uncontrolled shaking movements involving a large part of the body with loss of consciousness (called a tonic-clonic seizure) to shaking movements involving only a part of the body with varying levels of consciousness (focal seizure) to a slight momentary loss of awareness (absence seizure).
In most cases, a seizure lasts less than 2 minutes and the affected person needs some time to return to normal: usually 3 to 15 minutes, but it can take hours.
A provoked seizure is the result of a temporary event, such as low blood sugar, alcohol withdrawal, alcohol abuse along with prescription drugs, low blood sodium, fever, brain infection or concussion.
Unprovoked seizures may occur without a known or identifiable cause and are likely to be recurrent.
This type of seizure may be triggered by stress or sleep deprivation.
Diseases of the brain in which at least one seizure has occurred and the risk of recurrent seizures is known as epilepsy.
Any seizure lasting more than a short period is a medical emergency.
Any seizure lasting more than five minutes must be treated as an epileptic state, resulting in permanent brain damage or death.
The first seizure that occurs usually does not require long-term treatment with anti-epileptic drugs, unless a specific problem is found on an electroencephalogram (EEG) or brain imaging machine.
Generally, it is safe to complete the work-up for a single first-onset seizure as an outpatient treatment.
However, in many cases, what appears to be the first seizure was in reality preceded by other minor seizures that went unrecognised.
The signs and symptoms of epileptic seizures vary depending on the type of seizure. The most common type of seizure is the convulsive seizure (60 per cent).
Two-thirds of this type of seizure begin as focal seizures and become generalised, while one-third begin as generalised seizures. The remaining 40% of seizures are non-convulsive.
Focal seizures often begin with certain experiences, known as auras.
These may include sensory, visual, psychic, autonomic, olfactory or motor phenomena.
In a complex partial seizure, a person may appear confused or dazed and cannot respond to questions or directions.
Jerky activity may begin in a specific muscle group and spread to surrounding muscle groups, known as a Jacksonian march.
Unusual activities that are not consciously created can also occur: these are known as automatisms, which include simple activities such as smacking the lips or more complex ones such as trying to pick something up.
All generalised seizures involve a loss of consciousness and usually occur without warning. There are six main types of generalised seizures:
Tonic-clonic seizures present with a contraction of the limbs followed by their extension and arching of the back for 10-30 seconds.
A cry may be heard due to the contraction of the chest muscles.
The limbs then begin to tremble in unison.
Once the shaking stops, it can take 10-30 minutes for the person to return to normal.
Tonic seizures produce constant contractions of the muscles.
The person may turn blue if breathing is impaired.
Clonic seizures involve shaking of the limbs in unison.
Myoclonic crises involve muscle spasms in a few areas or generalised throughout the body.
Absence seizures may be imperceptible, with only a slight head movement or blinking.
Often the person does not fall and can return to normal immediately after the end of the seizure, although a period of post-stroke disorientation may occur.
Atonic seizures involve the loss of muscle activity for more than one second. They usually occur bilaterally (on both sides of the body).
A seizure can last from a few seconds to more than five minutes, which is known as status epilepticus.
Most tonic-clonic seizures last less than two to three minutes. Absence seizures usually last about 10 seconds.
After the active part of a seizure, there is usually a period of confusion called the post-ictal period, before a normal level of consciousness returns.
This period usually lasts three to 15 minutes, but can last for hours.
Other common symptoms are a feeling of tiredness, headaches, difficulty speaking and abnormal behaviour.
Psychosis after a seizure is relatively common and occurs in 6 to 10 per cent of people.
People often do not remember what happened during this period.
Epileptic seizures have several causes.
About 25 per cent of people who experience seizures have epilepsy.
Several conditions are associated with seizures, but are not caused by epilepsy.
These include most febrile seizures and those occurring in the vicinity of an acute infection, stroke or toxicity.
These seizures are known as ‘acute symptomatic’ or ‘provoked’ seizures and are part of seizure-related disorders.
In many cases, the cause is unknown.
Dehydration can trigger seizures if it is severe enough.
Several metabolic disorders can cause seizures, including:
Cavernoma and arteriovenous malformation are treatable medical conditions that can cause seizures, headaches and bleeding in the brain.
Abscesses and brain tumours can cause seizures of varying frequency, depending on their location in the cortical region of the brain.
Both drug overdose and drug overdose can cause seizures, as can withdrawal from certain medications and drugs.
The most common drugs that cause seizures are:
Withdrawal crises, or delirium tremens, commonly occur after prolonged use of alcohol or sedatives.
Infections cause many cases of seizures and epilepsy, especially in Third World countries.
These infections include:
Stress can cause seizures in people with epilepsy.
It is also a risk factor for the development of epilepsy.
The severity, duration and timing of stress during development contribute to the frequency and susceptibility of developing epilepsy.
It is one of the most frequently reported triggering factors by patients with epilepsy.
Stress triggers a release of hormones that mediate the effect of stress on the brain.
These hormones act on both excitatory and inhibitory neural synapses, causing overexcitation of neurons in the brain.
Epileptic seizures can occur as a result of a number of conditions or triggers, including
Seizures usually do not require emergency medical attention.
Only call the Emergency Number if one or more of the following conditions are true
General steps to help a person who is having any kind of seizure
When most people think of an epileptic seizure, they think of a generalised tonic-clonic seizure, called a grand mal seizure.
In this type of seizure, the person may scream, fall, tremble or shake and not be aware of what is happening around them.
(This position is not necessarily used by health workers, who have access to more advanced airway management techniques, such as tracheal intubation).
For all clinical emergencies, the first step is a rapid and systematic assessment of the patient. For this assessment, most rescuers use the ABCDE approach.
The ABCDE approach (Airway, Breathing, Circulation, Disability, Exposure) is applicable in all clinical emergencies for immediate assessment and treatment. It can be used on the street with or without equipment.
It can also be used in a more advanced form where emergency medical services are available, including emergency rooms, hospitals or intensive care units.
Guidelines for the treatment of an epileptic seizure can be found on page 94 of the National Model EMS Clinical Guidelines of the National Association of EMT Officials (NASEMSO).
NASEMSO maintains these guidelines to facilitate the creation of clinical guidelines, protocols, and operating procedures for state and local EMS systems.
These guidelines are evidence-based or consensus-based and have been formatted for use by EMS professionals.
The guidelines include the following assessment:
A) Medical history
B) Patient’s objective test
Protocols for pre-hospital treatment of seizures vary by provider, country and may also depend on the patient’s symptoms or history.
Below are the US Epilepsy Foundation’s prehospital treatment protocols.
All BLS operators/response:
– Ensure that the mouth and airway are clear of any objects that bystanders may have inserted with good intentions but incorrectly. Do not attempt to block the tongue.
– Loosen restraining garments around the neck and airway.
– Determine the need for airway support (breathing may be interrupted early in the attack when muscles contract, resulting in bluish discolouration of tissues, and may be shallow during the postictal phase).
– Keep the airway open and administer oxygen using an appropriate delivery device, such as a nonrebreather mask with 100% supplemental oxygen at 12-15LPM. (If ventilations require assistance, consider inserting a nasopharyngeal airway (NPA) and maintain this until the patient is able to control their airway).
– Assess the presence of a pulse and carefully monitor the heart rate. This is critical in a patient with active convulsions because of the risk of cardiac arrest due to low oxygen levels (hypoxia).
– Initiate and monitor ventilatory and cardiac status. If available, use BP, ECG, pulse oximetry, eTCO2 and other approved methods to monitor the effectiveness of cardiopulmonary systems.
– Look for a medical identification bracelet or necklace on the patient or in the patient’s wallet, if authorised (“epilepsy”, “seizure”, “seizure disorder”, “diabetic”, etc.). The absence of a medical history does not exclude epilepsy.
– Check the patient’s blood glucose level and treat as authorised.
– Check the patient’s temperature. Ensure that the hyperthermic patient (infant, child and adult) with epileptic seizures is not overdressed or cooled by approved methods. Do not allow the patient to shiver, thereby increasing metabolic rate and body temperature.
– Obtain a focused history from witnesses, family members or carers on any diagnosis of epilepsy and other precipitating events, history of pregnancy, diabetes, alcohol/drug use, history of abnormal ingestion or known head injury.
Source: emergency-live.com, Cristiano Antonino
If you have epilepsy, your body sends signals before the onset of a seizure. These signals can range from subtle changes in heart rate to more noticeable auras (warnings or feelings of an oncoming seizure). Not everyone can clue into these signals—particularly children or people with intense seizures that may incapacitate them quickly.
Seizure alert devices are tools that can help people with seizure disorders and those around them get notifications before the onset of a seizure. These notifications can provide valuable time to get help, create a safe environment, prevent injury, and even enable quick treatment.
This article discusses how seizure alert devices work and reviews some of the most common devices.
Seizure alert devices are tools that warn people with seizures and those around them about oncoming seizure activity. This can give you, or your family and friends, time to get to a safe place, take medications, or call for help.
Many seizure devices exist; one 2021 study identified 23 commercially available seizure detection devices. The majority of these devices were most effective in detecting tonic- (muscle stiffening) clonic (muscle jerking or twitching) type seizures. Different devices use different detection methods, including:
It can be difficult for people with epilepsy to recognize and respond to oncoming seizures. Some seizure activity is subtle and may not be noticeable to the person having the seizure or those around them.
In one study, over 25% of people with epilepsy reported not noticing daytime seizures, and more than half didn’t notice them at night. Family members reported recognizing seizures and oncoming seizure activity, but they, too, were uncertain about the reliability of the signs they saw. Even when EEG readings detected seizures, only about 60% of those having the seizure knew what was happening.
Poor detection and recognition of seizure activity can lead to increased injury or death and contribute to the underdiagnosis and undertreatment of seizure disorders. The goal of seizure alert devices is to improve the overall safety and quality of life for people with epilepsy.
One of the main drawbacks of seizure alert devices is that not every type can detect seizures equally. Most devices currently on the market rely on big movements to trigger an alert, so they are most useful for tonic-clonic or focal motor seizures (primary symptoms involve muscles). People with epilepsy with absent or partial seizures with minimal muscle movement or outward signs may not be a good candidate for a seizure alert device.
Other limitations of seizure alert devices include the following:
Your Body’s Seizure Alerts
If you have epilepsy or another seizure disorder, keeping a diary of things that happened or changes you noticed just before a seizure can help you recognize your body’s warning signs. In one study, around 70% of participants experienced cardiac changes like increased or decreased heart rate before a seizure.
Auras are considered the initial component of seizure activity, a predecessor to whatever altered state of consciousness may follow. One study estimated that around 64% of people with seizure disorders experience at least one type of aura symptom before a seizure begins. Aura symptoms may include:
- Vision changes
- A disconnect from reality
- Strong emotions, like anxiety or fear
- Sensitivity to smells or light
- Repetitive movements
- An odd taste in your mouth
The period you experience particular symptoms before a seizure is called the prodrome; tracking your symptoms during this time can help you recognize oncoming seizure activity.
Bracelets, watches, and other wearable devices are increasingly popular for various health applications, from tracking exercise to detecting abnormal heart rhythms.
Clinical monitors have been around for a long time, but EEG-based devices that can track your seizure activity on an outpatient basis have the potential to be uncomfortable and cumbersome.
Smartwatches that offer seizure alert or detection capabilities or add-ons are increasingly available on the commercial market. Still, studies evaluating these products have found that most lack the comprehensive tools needed to accurately detect and diagnose a range of seizure activity.
If you are interested in using a wearable device to track seizures, talk to your healthcare provider about the ideal product for your specific seizure activity. Some products have been specifically created for epilepsy detection, like the Embrace2—an FDA-approved smartwatch for detecting seizures—that can be difficult to find at retail locations.
Cameras are another tool that can be useful in managing seizure disorders. These devices start recording when seizure activity begins and are particularly useful for tracking seizures at night or in people living alone.
Recognizing and recording seizure activity can help you and your healthcare provider develop the right treatments for your specific condition.
Because nocturnal seizures can be hard to detect and treat, devices that monitor and protect you during sleep can be especially beneficial. Special mattresses, devices that attach to a mattress, and even pillows that can help reduce the risk of suffocation during seizures are all available and recommended for people who experience seizures while sleeping.
Anti-suffocation pillows with a unique lattice-style mesh material can help you breathe better if you are sleeping with your face on a pillow when a seizure strikes. Mattresses and mattress sensors, on the other hand, can detect motion and alert you or a caregiver of an active seizure.
Why Are Nighttime Seizures So Dangerous?
Most sudden deaths from seizures happen at night, with 58–86% of cases sleeping face down. In contrast, an estimated 6% of the general population sleeps face down, leading experts to conclude that breathing problems related to suffocation during seizure activity significantly contribute to mortality.
Animals—especially dogs—are attuned to even slight emotional or physical changes in their human companions. This makes dogs useful in providing detection and alerts for various medical conditions, including seizure detection.
A change in odor just before seizure onset is thought to trigger dogs. In one study, dogs correctly detected seizure-type odors 67–100% of the time. The report reveals that dogs have a sense of smell far more sensitive than electronic detection devices tested on the same odors. They can be trained to respond reliably with alert behaviors to help ensure their human companion’s safety.
Another study found that even pet dogs with no formal training, whose owners did not have epilepsy and had not witnessed a seizure, could consistently sense oncoming seizures and provide alerts.
In addition to detecting seizure activity, there are some products that both detect and help manage seizures.
The responsive neurostimulation system (RNS) monitors and detects seizure activity and responds with small bursts of stimulation designed to derail the abnormal signal that triggers seizures.
These devices are placed on the skull with wires and electrodes that sense seizure activity and deliver stimulation. RNS devices are particularly useful in treating the roughly 30% of people with seizure disorders who are resistant to anti-epileptic medications.
The vagal nerve stimulator (VNS) is another device to treat medication-resistant seizures. Like the RNS, this system detects seizure activity through electrodes placed just under the skin and responds with a small impulse. However, the difference between these systems is that the RNS targets particular areas of the brain, while the VNS provides stimulation to the vagus nerve.
The vagus nerve is part of the autonomic nervous system and helps control things like your heart rate and breathing. Stimulation delivered to this area can help send signs to the brain and potentially control or impede the dangerous physical effects of seizures.
There are many devices to help you detect oncoming seizures; what’s right for you will depend on your specific seizure type and frequency, your symptoms experienced during a seizure, and your goals for seizure detection.
One study from 2021 highlighted trust as the most important feature caregivers and people with seizures looked for in a seizure alert device. Fear that the device would miss seizure activity or fail to provide alerts played a significant role in which device people chose.
Talking to your healthcare provider about your diagnosis and seizure detection and management goals can help you find a suitable device.
Many devices on the market can detect, monitor, and even treat seizure activity. How well these devices work can depend on the type of device itself and the type of seizure you experience.
Involving your healthcare provider in selecting seizure alert devices may help you find the best fit for your specific form of epilepsy.
FREQUENTLY ASKED QUESTIONS
- Can smartwatches like the Apple Watch detect seizures?
Apple’s smartwatch offers an app for detecting seizures, but several other models are available from different manufacturers, too. The Embrace2 is a specific FDA-approved smartwatch that can detect seizures and provide alerts.
- What causes seizures?
There are many causes of seizures. Whatever the trigger—stress, hormones, or even blood sugar levels—seizures usually develop from an abnormal electrical signal resulting from the trigger.
- Do seizure monitors work for all types of epilepsy?
Most seizure monitors and alert systems rely on detectable movement or activity. Seizures that develop without outward physical signs, like absent seizures, can be more difficult for these monitors to detect.
Source: verywellhealth.com, Rachel Zimlich BSN RN, Nicholas R. Metrus MD
Epilepsy clinical trials study possible interventions for seizure prevention. Interventions might include medications, procedures, or behavioral changes.
Researchers often conduct lab studies to establish risks and benefits before moving to human trials. Those with epilepsy participate in clinical trials to receive cutting-edge treatment and contribute to valuable research.
This article reviews epilepsy clinical trials, what they are, how they work, types, benefits, risks, participation requirements, and frequently asked questions when considering participation.
Epilepsy clinical trials study new possible interventions to stop seizures. They might center around:
While there is no cure for epilepsy, trials have led to more specific and effective treatments with fewer side effects. For example, Epidiolex (cannabidiol) is a newer medication that prevents seizures for some with previously drug-resistant epilepsy
Various healthcare, academic, and pharmaceutical institutions fund clinical trials. Locations include research centers, clinics, hospitals, and universities.
Researchers begin with a protocol that maps out the study design. The design includes eligible participants, sample size, and duration.
A safety board approves the protocol, and the research team begins the clinical trial. This team includes a principal investigator, healthcare providers, and social workers. Human volunteers review the protocol, give consent, and become part of the team.
Clinical trials study experimental medications, devices, procedures, or therapies. Their goals vary and may center around the following:
Most people are familiar with treatment or interventional clinical trials. Depending on their study design, participants may get the new intervention, traditional treatment, no treatment, or a placebo.
A placebo is a substance that doesn’t have a therapeutic effect. However, some protocols stipulate that every participant receives the treatment once the trial concludes.
Studies that utilize placebos randomly assign participants the treatment or the placebo to decrease the risk of bias. There are two types of placebo studies:
Informed consent ensures participants have ample information before enrolling in a study. Researchers provide documents or question-and-answer sessions about expectations, timelines, risks, benefits, and alternatives.
Once participants or guardians feel comfortable, they sign an informed consent document. This document is not a contract; participants can withdraw at any time.
Food and Drug Administration (FDA) approval is necessary to prescribe medications in the United States. The FDA requires medication clinical trials to go through the following phases before approval.
Clinical trials are essential tools for medical advancement. But it’s important to understand the risks and benefits before volunteering for one.
Clinical trial protocols outline inclusion criteria, expectations, treatment regimens, and the length of the study. If they aren’t outlined, don’t be shy about asking the researchers. They want you to fully understand and be comfortable before joining.
Clinical trial protocols typically include eligibility criteria. For example, some require healthy volunteers, while others only accept those with epilepsy. Eligibility criteria may also involve:
You can ask your healthcare provider, local hospitals, community clinics, or universities if they know of any current clinical trials in your area.
The National Library of Medicine has a searchable clinical trial database. You can also go directly to its epilepsy clinical trials database.
Once you find a study you are interested in, it will provide you with inclusion criteria. The advanced search feature also allows you to sort trials by the following criteria:
Researchers often begin their study with preclinical laboratory (in vitro) studies. This provides baseline information regarding safety before moving to human clinical trials.
In the United States, federal laws have strict rules to protect your safety, rights, health, and privacy. These laws include utilizing an institutional review board (IRB). This board must approve the protocol before the trial begins.
What Is an IRB?
An IRB comprises doctors, researchers, and nonmedical community members. They review the protocol to ensure it’s ethical and safe. IRB members assess risks and benefits and can ask for protocol changes. They also review informed consent documents and monitor for conflicts of interest.
Some studies also have a data monitoring board that includes people who are not directly involved in the study. They can stop the study anytime if they are concerned about safety or efficacy.
The Office of Human Subjects Research Protection and the FDA can also determine whether a study adequately protects participants.
The following list of frequently asked questions may help you decide on joining a clinical trial:
Speak with your healthcare provider(s) before joining a clinical trial. They may want to ask the research team questions about the possible intervention. This helps them know if they need to adjust any of your treatments and how to monitor you. There may also be screening tests they need to order before you begin the trial.
Epilepsy clinical trials study new possible interventions, including medications, procedures, and behavioral changes. While there is no cure for epilepsy, previous trials have led to more specific and effective treatments with fewer side effects.
Participants join clinical trials to gain access to preapproved, new treatments and to contribute to valuable epilepsy research. If you want to join one, check their protocol to see if you meet the eligibility criteria.
In the United States, federal laws have strict rules to protect participants’ safety, rights, health, and privacy. These processes include informed consent, IRB boards, data monitoring boards, and federal agency oversight.
FREQUENTLY ASKED QUESTIONS
- Is there a cure for epilepsy?
While there is no cure for epilepsy, there are treatments that reduce or eliminate seizures with minimal side effects. Treatment works best when the proper medication is prescribed based on a person’s specific epilepsy syndrome, seizure type, and genetic mutations.
- Have there been any recent advancements in epilepsy treatment?
Yes, there have been incredible advancements in epilepsy treatment. For example, Epidiolex (cannabidiol or CBD) is a new medication that treats forms of drug-resistant epilepsy. One new clinical trial involves the Targeted Augmentation of Nuclear Gene Output (TANGO), a type of gene therapy.
- How do you know if you’d be a good fit for an epilepsy clinical trial?
Clinical trials have a protocol that includes eligibility criteria. The National Library of Medicine epilepsy clinical trials database includes this information for most studies.
Source: verywellhealth.com, Brandi Jones MSN-ED RN-BC, Brigid Dwyer MD
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.
Source: technologynetworks.com, Yale School of Medicine
A FUNDRAISING campaign in memory of a 23-year-old man who died suddenly from epilepsy has surpassed its target of raising £150,000.
Last summer, 17 cyclists completed a mammoth cycle from London to Achill Island in memory of Shane Corrigan, who died suddenly in January 2018 as a result of Sudden Unexpected Death in Epilepsy (SUPEP).
His parents, Kevin and Peggy Corrigan who are both natives of Achill, organised the 800 mile cycle from London where they live to Achill in order to raise funds for Epilepsy Ireland and the UK-based charity SUDEP Action and to raise awareness of epilepsy among the public.
A target of £150,000 was set and last week, the Cycle for Shane group announced that they had reached the target.
Speaking to The Mayo News, Peggy said they were delighted to reach the target and hoped to be able to donate close to £160,000 to the charities at the Shane Corrigan Memorial Ball in London at the end of the month.
“This started as a very small idea and to manage to raise £150,000 which in today’s climate is a huge amount of money is incredible. We had set ourselves two huge tasks and at times we thought ‘what are we doing?’. But actually I never felt we would not achieve it because we had so many people supporting us and telling us we were doing the right thing for the right reasons.
“The people who have supported us have been incredible and many of them were complete strangers. People have been unbelievably good,” she said.
In Ireland, an estimated 40,000 people are living with epilepsy but the research on the condition is minimal. One of the aims of the cycle was to raise awareness of epilepsy among the general public and Peggy believes that the cycle has done that.
“One of the two objectives was to raise awareness of epilepsy because people still don’t talk about it. People who have it are not great at sharing the fact they have it because of the stigma related to it. That was one of the incredible things about the bike ride. People were coming up to us saying they have epilepsy and people were actually talking about it. One woman for the first time told us how her child had died too and they were talking about something that’s not talked about enough,” she said.
Peggy was one of the 17 cyclists who completed the cycle and all bar one will be in the Stoke Place Hotel for the Shane Corrigan Memorial Ball to hand over the cheque. She said that the group was a mixture of novices and experienced cyclists but it was a week they will never forget.
“It had a huge impact on all of the cyclists and some of them would say it was probably one of the best weeks of their lives. None of us would have foreseen the impact on other people or the impact they had on us. It was not just a cycle because the emotional involvement in this was huge. One of the cyclist has done London to Paris and Land’s End to John O’Groats and he said he never felt anything like he felt in this one.”
Source: mayonews.ie, Anton McNulty
Riley Naldrett didn’t want the usual gifts this Christmas.
Instead, she asked her parents to use the money they would have spent on her to buy gifts for children in the Pediatric Unit at Winchester Medical Center.
Then on Dec. 15, the Nokesville teen and her parents drove to Winchester to deliver about $800 in gifts and gift cards to 13 children and 12 staff members.
Not wanting her to return home empty-handed, Riley’s parents surprised the 15-year-old with some stocking stuffers for Christmas morning.
“We are so proud of her for having this idea, but we also wanted her to have a nice Christmas as well,” said her mom, Amanda Naldrett.
Riley, a ninth grader at Chelsea Academy in Front Royal, said she was inspired to help other children after spending a week at the hospital beginning in second grade and needed medication for a rare form of epilepsy.
“Having epilepsy myself, I know that it is really hard to stay in the hospital,” Riley said. “And it’s hard to have something that you have no control over.”
Though scary, her hospital stay was also boring while staff monitored her for a seizure so they could know what treatments to pursue. To keep busy, Riley made bracelets that she then sold to nurses for pretend money in a pretend store in her hospital room, her mother recalled.
During her stay, Riley noticed how some of the young patients suffered from difficult conditions, including some kids who might not get home.
It was the start of Riley’s interest in giving children stuck in the hospital something fun to do, Naldrett said. Her daughter also considered what it must be like for children to stay in the hospital over Christmas, as well as for the nurses and doctors who care for children over the holidays.
In past years, the family gave a few gift cards and toys to staff and patients, but Riley wanted to make a bigger impact this year.
“I just wanted to make sure that they had enough toys for the kids and that the age groups matched them,” she said.
Most gifts they bought were travel games and stress-reliever toys that kids of various ages could use and enjoy. They also bought LEGO sets and electronic toys like tablets.
When Naldreett posted on her Facebook page about the effort, inviting people to donate if interested, she said four friends contributed gift cards and sent toys they bought online.
The experience was great for the staff and patients, said WMC Child Life Specialist Tanya Armstrong.
“It was wonderful to meet Riley and her family again,” she wrote in an email.
“She was beaming, and it was very clear that she felt good about what she had chosen to do,” Armstrong said. “Her age and experience as a patient gave her the right perspective to choose gifts that were spot on. She’s a very special young lady and her generosity has brightened the days of our pediatric patients and staff.”
It’s also an experience that Riley wants to do again.
“It’s a really great thing to do,” Riley said. “I would absolutely love to do it again in the future.”
Source: dnronline.com, Josette Keelor