A tribute to our Patron, Her Majesty The Queen

A tribute to our Patron, Her Majesty The Queen

Her Majesty The Queen during a visit to the Epilepsy Society in 1985

For seven decades, we have been proud and privileged to have Her Majesty The Queen as Patron of the Epilepsy Society.

We know that epilepsy was a cause that was very close to her heart. The Queen’s uncle, Prince John lived with seizures during his short life and is believed to have died of his epilepsy at the age of 13. As anyone who has lost a loved one to epilepsy knows, the impact on a family can live on for generations to come. The loss, the heartache and the need to stop others living through the same unimaginable grief are unending.

During her lifetime the Queen supported over 600 charities in the UK, recognizing the invaluable role they play in making a difference to the lives of people both at home and abroad. Following her 90th birthday, Her Majesty began to relinquish some of her patronages. We are proud that she remained, until her death on 8 September 2022, our much loved patron.

A true inspiration

Clare Pelham, Chief Executive of the Epilepsy Society said: “Her Majesty The Queen has been an inspiration to people around the world. Everyone, in nations far and wide, will have cherished memories of what she meant to them. That is what makes it so special for us at the Epilepsy Society, that throughout her reign, in spite of all the demands on her time as monarch, the Queen remained a loyal and constant supporter of our charity and of the 600,000 people in the UK with epilepsy.

“Epilepsy is often considered something of a Cinderella condition, slightly in the shadows and often overlooked. But the Queen’s stalwart position as our patron meant royal recognition for the condition. It meant solidarity, empathy and understanding.

“We often say that epilepsy has no respect for kings and castles. It can affect anyone of any race, faith, age or gender. The Queen’s patronage of the Epilepsy Society was a great testimony to this.”

How the Queen’s charity has changed lives

During Christmas 2020, with the nation in lockdown, we sent a special festive message to Her Majesty at Windsor Castle via Zoom. Many people whose lives have been changed by the Epilepsy Society joined us on the call to tell the Queen just what a gamechanger her charity has been.

Well-wishers included a young mum who had undergone brain surgery to stop her seizures and who is now a nurse in the NHS with two young boys; there was a GB judo fighter whose dreams of representing Great Britain in the next Paralympics have been made possible by treatment at the Chalfont Centre; and there was a couple whose whole family have been helped through genomic sequencing.

Clare Pelham continued: “They all had a simple message for the Queen, which I believe says it all, from all of us at the Epilepsy Society: ‘Thank you.’ ”


Source: epilepsysociety.org.uk, Nicola Swanborough

Epilepsy rescue therapy significantly increases time between seizure clusters

Epilepsy rescue therapy significantly increases time between seizure clusters

Newly published data indicates a significant increase in time between seizure clusters (SEIVAL) treated with Neurelis’s Valtoco® CIV.

“The most exciting finding of the study is the robustness of the signal in the cluster-interval data,” noted co-author and Assistant Professor of Neurology at Harvard Medical School, US, Dr Jurriaan Peters. “The results consistently showed a clinical and statistical increase in the time between use of intranasal diazepam, Valtoco, over time. This data highlights the potential for future research into additional benefits of rescue medications in treating individual seizure clusters.”

Neurelis’s Valtoco® (diazepam nasal spray) CIV is a nasal spray for the acute treatment of episodes of frequent seizure activity in adult and pediatric patients aged six years and older. It is an intermittent rescue therapy that may be used for treating seizure clusters – emergencies when two or more seizures occur within 24 hours, and increase the risk of status epilepticus, emergency room visits and reduced quality of life.

Of 163 treated patients enrolled in the 12-month study, an increase in time between seizure clusters (seizure interval [SEIVAL]) was noted from the first three months of the trial (Period 1) to all subsequent periods. A subset of patients (n = 76) from a 12-month Phase III safety study demonstrated the mean SEIVAL increased significantly, from 13.9 days in Period 1 (day 1-90) to 26.8 days in Period 4 (day 271-360), an average increase of 12.9 days between seizure clusters treated with Valtoco. The trial enrolled participants aged six to 65 years, in adult patients enrolled, Quality of Life in Epilepsy scores were maintained with increased SEIVALs.

“Neurelis is deeply committed to improving the lives of people with epilepsy and we are particularly enthusiastic about the potential of these findings,” commented Neurelis CEO, Craig Chambliss. “Until now, no data existed on the impact of intermittent rescue therapy on the long-term course of seizure clusters, and these results may open important new avenues of research on timely, safe and effective acute treatment application.”

Source: europeanpharmaceuticalreview.com, Hannah Balfour

When Is It OK to Drive If You Have Epilepsy?

When Is It OK to Drive If You Have Epilepsy?

If you have epilepsy, you may wonder whether you can drive. The answer to this question is unique to each person. Depending on your specific medical situation and the laws in your state, you may be able to drive if you have epilepsy.

Communication with your healthcare team is key to making sure you can safely drive. Keep reading to find out what you need to know if you have epilepsy and want to drive.

Can you drive if you have epilepsy?

Legally, every U.S. state allows certain people with epilepsy to drive. Because each state has its own individual requirements, it’s important to make sure you’re up to date on the ones in your state.

Many states require people to be seizure-free for a specified amount of time before getting behind the wheel. That seizure-free period can range anywhere from 3 months to 2 years.

They may also require a physician’s evaluation of your ability to drive safely, or they may ask you to submit your medical records periodically to ensure that you’re receiving appropriate and effective treatment.

In general, though, states require that you’re seizure-free, that you ensure your seizures are manageable, and that your neurologist feels that your seizures are under control.

For many people with epilepsy, working with a neurologist to help manage symptoms can help them reach a state’s required seizure-free threshold. In fact, according to the World Health Organization (WHO), up to 70% of all people with epilepsy could become seizure-free with the appropriate treatment.

How do you find the laws about driving with epilepsy in your state?

An easy way to learn more about your state’s specific guidelines is through the Epilepsy Foundation’s searchable state-by-state database.

You can also contact your state’s Department of Motor Vehicles (DMV) or Department of Driver’s Services (DDS).

Which types of seizures are a greater risk if you drive?

Epilepsy symptoms may look different for each person.

There are two main types of seizures: partial (focal) and general.

Focal seizures

Seizures that do not cause loss of consciousness are called focal seizures, previously called partial seizures. These affect one part of the brain and can cause:

  • changes in taste or smell, sight, hearing, or touch
  • dizziness
  • twitching and tingling limbs
  • staring blanky
  • unresponsiveness
  • repetitive movements

Generalized seizures

Generalized seizures affect the entire brain and may lead to a variety of symptoms. Subtypes of generalized seizures include:

  • Absence seizures: Absence seizures used to be called “petit mal seizures.” This type can lead to loss of awareness, blank stares, and repetitive movements like lip smacking or blinking.
  • Tonic seizures: Tonic seizures create sudden stiffness in your legs, arms, or trunk.
  • Atonic seizures: Also known as “drop seizures,” atonic seizures occur because of a sudden loss of muscle strength which can make you fall suddenly.
  • Clonic seizures: This type can cause jerky muscle movements of the face, neck, or arms.
  • Myoclonic seizures: Myoclonic seizures cause quick twitching of the arms and legs.
  • Tonic-clonic seizures: Once called “grand mal seizures,” tonic-clonic seizures are some of the most severe seizures you can experience. Symptoms include stiffening of the body followed by muscle jerking, shaking, loss of bladder or bowel control, biting of the tongue, and loss of consciousness.

Experiencing any of these types of focal or generalized seizures while driving is dangerous for you and others on the road.

It’s important to work with your neurologist to ensure you meet your state’s guidelines and have been seizure-free for the legally required time period.

What is epilepsy?

Epilepsy is a chronic neurological condition that causes repeated seizures. Epilepsy affects over 50 million people worldwide. You may be diagnosed with epilepsy if you experience two or more unprovoked seizures.

Seizures happen when there’s a rush of intense electrical activity in your brain. This electrical activity can lead to a wide variety of symptoms like involuntary movements and loss of consciousness.

There are several different types of seizures, and some are more common at different ages. One type of seizure in children is characterized by a period of absently staring off and being unresponsive. Meanwhile, in adults, the most common seizures consist of an episode of involuntary movement in part of the body (partial seizure) or across the entire body (generalized seizure).

Seizures look different for everyone but certain occurrences, such as tongue biting, loss of consciousness, and loss of bowel or bladder control, can help inform healthcare professionals when diagnosing epilepsy.

Although there’s no cure, there are many ways to manage epilepsy through medication and other therapies.

Does taking seizure medications mean you can’t drive?

Antiepileptic drugs (AEDs) are the first-choice medication for most people with epilepsy. While AEDs can be very effective in reducing your risk of seizure, they can lead to side effects, including:

  • dizziness
  • fatigue
  • trouble concentrating
  • sleepiness
  • loss of balance
  • loss of memory
  • slow reaction times

These symptoms may be more severe and happen more often if you’re starting a new medication or changing the dosage of a medication you’re already taking. Some medications even have labels alerting you to “not operate heavy machinery.”

However, a 2018 study found no increase in accidents reported by drivers taking AEDs. They did find that drivers with epilepsy had about a 30% greater chance of having an accident while driving than drivers who did not have epilepsy. These results were similar to those of other studies.

Discuss your medications and whether you can drive while taking them with your neurologist and healthcare team.

Do other countries have laws about driving with epilepsy?

Driving outside of the country with epilepsy requires research into each country’s rules and regulations.

For example, in Europe, the guidelines vary widely based on the country you’re in. Some countries implement a 12-month seizure-free interval, while others have a blanket ban on any person with epilepsy driving. Many advocates and task forces are working to unify the regulations across Europe.

However, in many other countries, people with epilepsy remain restricted from driving.

Do drivers with epilepsy have more accidents?

Studies on whether drivers with epilepsy have more accidents than those without epilepsy are difficult to conduct, and more research is needed in this area.

However, a review from 2019 found that up to 39% of people with epilepsy drove in violation of their state-determined restrictions. Driving outside of the required seizure-free interval or without the OK from a neurologist or other appropriate healthcare professional may put you at greater risk of having a seizure while driving.

Another recent study estimated that people with epilepsy have an accident rate between 1.13 and 2.16 times that of people without epilepsy.

Frequently asked questions

What should I do if someone is having a seizure?

If possible, you can ensure that the area around the individual is free of hazards to them including furniture that they may hit during the seizure.

If the seizure lasts for more than 5 minutes or this is the person’s first seizure, you should call 911 and activate the emergency response system.

The common advice that you should put a wallet or stick in the seizing person’s mouth or restrain them is not true. In fact, these interventions can lead to more harm to the person having a seizure and to other people trying to help.

If I have only had one seizure, do I have epilepsy? Can I drive?

Having one seizure does not necessarily mean that you have epilepsy.

However, you’ll have to follow your state’s rules about how long you must be seizure-free before you’re allowed to drive a car again, even if you have only had one seizure.

Your doctor can diagnose your seizure and help you learn if and when you are able to drive again.

How long does a seizure last?

Most seizures last between 30 seconds and 2 minutes. Afterward, people may be confused or disoriented.

A brief seizure is often not detrimental to the brain. But seizures lasting longer than 5 minutes can cause significant damage and are often managed with medications to terminate the seizure.

If someone has a short seizure, do they need to go to the hospital?

People with epilepsy do not need to call 911 every time they have a seizure. It depends on the events of the seizure they had.

Most people with epilepsy have a seizure care plan, and many may wear a special medical alert bracelet with helpful information in case they have a seizure.

Call 911 or seek medical care for an individual who has a seizure if:

  • the person is injured
  • it’s their first seizure ever
  • the seizure lasts more than 5 minutes
  • the person is unconscious after the seizure stops

The takeaway

Driving while having epilepsy is about finding a balance between safety and practicality.

If you’re driving with epilepsy, you must ensure that you’re following your proper state seizure-free threshold guidelines and communicating clearly and honestly with your healthcare professional about your seizure symptoms.

Thousands of people with epilepsy drive every day. It is up to you and your healthcare professional to determine how best to manage your symptoms to ensure you get home safely.


Source: healthline.com, Sydney Randall

ADHD and Epilepsy Often Co-Occur — Here’s What Experts Know About the Link

ADHD and Epilepsy Often Co-Occur — Here’s What Experts Know About the Link

Around 1.2% of people in the United States live with epilepsy, a neurological condition that causes recurring seizures.

If you number among those 3.4 million people, you might be much more likely to have attention deficit hyperactivity disorder (ADHD) than the general population.

Like epilepsy, ADHD affects your brain, though it doesn’t cause seizures. ADHD symptoms typically relate to your ability to concentrate and focus your attention, though you might also experience hyperactivity and impulsivity.

Experts have yet to determine exactly why these two conditions appear together so often, since neither condition directly causes the other. Rather, they seem to share biological roots.

Read on to learn more about the shared risk factors for ADHD and epilepsy, as well as how certain medications may have an impact on your symptoms.


ADHD, which affects 8.4% of kids and 2.5% of adults, is more common than epilepsy.

Because of this difference, most studies measure how many people with epilepsy also have ADHD, rather than the other way around.

What’s the connection?

The same factors that cause epilepsy may also increase your chances of developing ADHD.

These include:

  • genetics
  • brain structure differences
  • brain injury
  • prenatal exposure to drugs or toxins, especially alcohol

If you have both epilepsy and ADHD, you may also have neurological differences that factor into certain ADHD symptoms:

  • Less thalamus volume: One small 2012 study suggested that fewer nerve fibers coming out of the thalamus may lead to inattention symptoms.
  • Less gray matter in the frontal lobe: The frontal lobe helps you make decisions. A small 2016 study linked less gray matter in this area to the inattentive subtype of ADHD.
  • Less brain stem volume: If you have a smaller brain stem, you may have a harder time staying alert, according to a small 2014 study.

In adults vs. kids

Children with epilepsy tend to have much higher rates of co-occurring ADHD than adults with epilepsy. While up to 40% of children with epilepsy also have an ADHD diagnosis, only 13% to 18% of adults with epilepsy have an ADHD diagnosis.

Of course, some of this reported difference may relate to the fact that both epilepsy and ADHD are often diagnosed in young childhood.

The average age of onset for epilepsy is 3.7 years old, and the average age of onset for ADHD is 6 years old. As such, most screening for these conditions happens in childhood.

As an added complication, adult ADHD tends to be underdiagnosed. Symptoms like inattention and hyperactivity can be more subjective than seizures. So, you may get a diagnosis of epilepsy before an ADHD diagnosis, even if you have both conditions.

Does ADHD type make a difference?

People with epilepsy may be more likely to have the inattentive type of ADHD. Inattentive type ADHD mostly involves symptoms that relate to attention and focus, so you may notice few, if any, hyperactivity symptoms.

It’s certainly possible to have epilepsy and combined type ADHD, though — and when these conditions occur together, they may involve more severe symptoms.

According to one 2007 study, children with both inattention and hyperactivity symptoms may be more likely to have:

  • generalized seizures
  • earlier symptom onset
  • drug-resistant epilepsy

Family history can increase risk of comorbidity

No evidence suggests epilepsy can cause ADHD, or vice versa. Yet, since the conditions often appear around the same time, it can certainly seem like one condition triggers the other.

Your family history plays a major role in whether you have both conditions. According to a 2017 study, if you have epilepsy, your chances of developing ADHD go up by:

  • 56% if you have a sibling with epilepsy
  • 64% if your father has epilepsy
  • 85% if your mother has epilepsy

Having a family member with epilepsy or ADHD doesn’t guarantee you’ll develop either condition yourself. But if you have a family history of one or both conditions, paying attention to early signs of epilepsy and ADHD can help you get the right diagnosis and treatment sooner rather than later.

Can having both conditions worsen symptoms?

Your ADHD symptoms may worsen if you also have epilepsy.

Research from 2015T suggests epilepsy can make it difficult to sustain attention, especially if you have generalized seizures. You may also have trouble with short-term memory.

Having ADHD and epilepsy together can also be more difficult to manage than either condition alone. A study from 2015 compared adults with only epilepsy and adults with epilepsy and co-occurring ADHD symptoms. People with both conditions reported:

  • a lower quality of life
  • worse physical health
  • more difficulties with social function
  • a higher chance of being unable to work due to disability

Does medication have an impact?

Medication often plays an essential role in both ADHD and epilepsy treatment. However, the medication for one condition may worsen symptoms of the other condition.

Can antiepileptic drugs worsen ADHD?

Some antiepileptic drugs (AEDs) cause side effects that resemble ADHD symptoms. They can also worsen existing ADHD symptoms, including:

  • trouble focusing
  • executive dysfunction, or difficulty with planning and managing impulses
  • impaired short-term memory
  • agitation or fidgeting

The AEDs most likely to exacerbate ADHD symptoms include:

  • phenobarbital
  • topiramate (Topamax)
  • valproic acid
  • phenytoin (Phenytek)

On the flip side, other AEDs may help improve ADHD symptoms. These medications include:

  • carbamazepine (Carbatrol)
  • lacosamide (Vimpat)
  • lamotrigine (Lamictal)

Carbamazepine and lamotrigine may also help enhance attention.

Can ADHD medications worsen epilepsy?

The ADHD medication atomoxetine (Strattera) may worsen seizures for some people with epilepsy.

In a 2020 study involving 105 Korean children and adolescents with epilepsy and ADHD who took atomoxetine, about 8% said their seizures became more frequent or severe. One participant stopped taking atomoxetine as a result.

For the most part, though, ADHD medications appear safe for many people with epilepsy.

A large 2018 study examined hospitalization rates among children with epilepsy over a period of more than 10 years. Children who took stimulant medications were no more likely to be hospitalized for seizures than those who didn’t take stimulant medications. These findings held after researchers controlled for participant demographics and epilepsy type.

Could ADHD medication lower seizure risk?

In a 2019 Swedish study, researchers compared periods when participants did and didn’t take ADHD medication. When they took their medication, the risk of acute seizures dropped 27%.

The researchers suggested treating ADHD symptoms may have helped participants remember to take their epilepsy medication. They also noted that improvements in ADHD symptoms may have helped ease stress and minimize alcohol use, both of which can prompt seizures.

It’s also possible that taking ADHD medication led to changes in the brain that helped reduce participants’ seizure risk.

Finding the right treatment

If you live with both ADHD and epilepsy, finding the right treatment can go a long way toward helping you manage symptoms effectively.

Treatment for comorbid ADHD and epilepsy may involve medication, therapy, and occupational interventions.


Not much research has explored the most effective combinations of AEDs and ADHD medication. Your doctor will likely prescribe medication based on the type of ADHD and epilepsy you have.

Always take your medications exactly as prescribed, since increasing or decreasing your dose on your own can have serious health consequences. If you experience uncomfortable side effects or worsened symptoms, your doctor or psychiatrist can adjust your dosages safely, with as little disruption to treatment as possible.

If you notice any change in your symptoms after starting a new medication, let your care team know right away so they can address it.


If you have both ADHD and epilepsy, therapy may help with some of your symptoms.

According to the International League Against Epilepsy Psychology Task Force, psychological interventions have the most benefit if you have:

  • depression along with these conditions
  • neurocognitive concerns, such as difficulty controlling impulses
  • difficulty taking medication as prescribed

The specific type of therapy you find most helpful can depend on the issues you want help with. If behavioral concerns or seizures disrupt home or school life, family therapy could make a difference.

On the other hand, if you need help sticking with treatment or avoiding symptom triggers, you might consider:

  • motivational interviewing
  • cognitive behavioral therapy
  • acceptance and commitment therapy

Occupational interventions

Children with both ADHD and epilepsy may need extra support in school. You can work with your child’s teachers to find the most effective accommodations for their specific needs.

Cooperating with your school becomes especially important if your child has a learning disability, such as dyslexia or dysgraphia.

According to the Learning Disabilities Association of America, almost 50% of people with epilepsy also have a learning disability. Among kids with ADHD, around 30% also have a learning disability.

As an adult with comorbid ADHD and epilepsy, you may be eligible for workplace accommodations. It’s also a good idea to let your co-workers know about potential seizure triggers, like flashing lights, to make your workplace as safe as possible for you.

The bottom line

Many people with epilepsy also have ADHD, and having both conditions can have more of an impact on your daily life than either condition alone.

That said, getting professional treatment can make a big difference in your symptoms and your overall quality of life.

Finding the right treatment approach may involve some trial and error, since some medications designed to treat one set of symptoms can worsen other symptoms. Always inform your care team about any comfortable side effects or worsening symptoms, and talk with them before you stop taking your medication.


Source: healthline.com, Emily Swaim  Artist: Haley Manchon













Rafa receives FDA approval for autoinjector to treat status epilepticus in adults

Rafa receives FDA approval for autoinjector to treat status epilepticus in adults

Rafa Laboratories announced the FDA has granted approval for its 10 mg midazolam autoinjector to treat status epilepticus in adults.

According to a release issued by Rafa, the midazolam injector was created in collaboration with the U.S. Department of Defense’s Joint Program Executive Office for Chemical, Biological, Radiological and Nuclear Defense (JPEO-CBRND). The two entities previously partnered to develop Rafa’s atropine autoinjector, which launched in the U.S. in 2017.

The midazolam autoinjector can be used to treat seizures resulting from nerve agent exposure, and, according to the U.S. JPEO-CBRND, it improves upon and will replace the currently fielded convulsant antidote for nerve agent diazepam autoinjector.

“We are proud of the FDA approval for this life-saving product,” Rafa CEO Amir Levin stated in the release. “It is made in Israel and is meaningful news to the world of medical emergency solutions, thus strengthening Rafa’s key role in providing reliable products to armies, governments and first responders worldwide.”

Rafa said in the release that intramuscular midazolam is a first-line therapy for status epilepticus according to guidelines of the American Epilepsy Society. Rafa’s autoinjector, which can be administered directly in the thigh or through clothes, does not require an IV line and will be advantageous in a field setting during an emergency, when fast treatment reduces the likelihood of permanent damage that could result from a continuous seizure, according to the release.

“Clinical studies confirmed the correlation between early treatment of status epilepticus and a reduced risk of an ongoing and irreversible neurological damage,” Roy Shay, head of emergency solutions at Rafa, said in the release. “This product could assist in saving many lives around the globe.”

Source: healio.com, Heather Biel

A nasal spray to treat epilepsy

A nasal spray to treat epilepsy

Early results for an anti-seizure drug administered as a nasal spray show a more targeted approach to helping get seizures under control.

Alzheimer’s disease is one of the most common causes of dementia. Besides memory loss and other cognitive disabilities, patients with this neurological disorder can also experience recurring seizures, better known as epilepsy, caused by uncontrolled neuronal activity in the brain that results in involuntary muscle movements and abnormal states of awareness.

“Alzheimer’s disease affects nearly 50 million people globally,” said Qin Wang, professor in the Department of Neuroscience and Regenerative Medicine and director of the Program for Alzheimer’s Therapeutic Discovery in the Medical College of Georgia at Augusta University. “In these patients, the prevalence of seizures reaches up to 64%.”

Seizures can be also brought on as a result of injury or else triggered by medication. When untreated, these events can result in the death of neurons, which causes devastating consequences for patients and their quality of life in the long term.

Clinical treatments which help control convulsions are available but unfortunately almost a third of epileptic patients don’t respond to them. Due to specific changes that occur in the neurons of patients with Alzheimer’s, finding an appropriate treatment is even more problematic.

“It is highly challenging [to treat seizures in Alzheimer’s disease] since most current anti-seizure drugs have adverse effects on cognition or mood,” said Wang. “We need different, more targeted therapies for seizure termination, which would also help patients with drug-resistant seizures.”


Targeting a receptor in the brain

Wang has been studying how to control the activity of a receptor in the brain called the adenosine 1 receptor (or A1R), which when activated, prevents neurons from becoming overexcited and progressing to a seizure state.

In a recent study, she and her team described how a molecule they created called A1R-CT was able to indirectly activate A1R to reduce epileptic attacks in disease models. The research team believes A1R-CT could be tested in humans to treat epileptic events in the future.

“Our study opens a new direction for therapeutic development of seizure control,” said Wang. “If successfully developed for human use, the A1R-CT peptide would represent the first [drug] to offer a more targeted therapy facilitating seizure termination.”

As Wang says, current drugs target unspecific biological mechanisms, which produce a general silencing of neuronal activity. This strategy is not always helpful, since epilepsy can be caused by other changes in the brain that are resistant to this type of medication. That is why she and the team decided to create A1R-CT, a molecule that triggers a defense mechanism that occurs naturally in the brain.


Getting seizures under control

When seizures occur, the brain has a natural way of terminating them by activating A1R, which “turns on” cellular mechanisms to calm neuron activity. But simply developing a therapy to directly activate A1R would be unsafe because this receptor is found in organs and tissues outside of the brain. Said therapy would cause a myriad of unwanted side effects, such as arrhythmias when A1R is activated in the heart.

Wang and her team focused on finding a way to promote A1R activation specifically in the brain with a strategy that wouldn’t affect other organs.

In a previous study, her team identified a group of proteins that link together with the A1R receptor to form a cluster of several molecules commonly known as a protein complex. Under normal conditions, the formation of this complex blocks the continuous activation of A1R.

They found that one of the proteins in the complex is a synaptic protein called neurabin and explored the effects of removing it. When they treated neurons with an A1R activator, they observed the receptor function increased if neurabin was absent.

Wang and her team therefore decided to try obstructing the formation of this protein complex by preventing neurabin’s binding to A1R, leaving A1R “free” to terminate seizures by calming cellular activity.

To do this, they created two short proteins (commonly known as peptides) called A1R-CT and A1R-3iloop, each of which mimic different sections of A1R that link to neurabin. After testing, they observed that A1R-CT better disrupted A1R-neurabin binding, and when tested in mice, seizures reduced in frequency and duration.

“This [discovery] is based on many years of research on this receptor [A1R] and its regulators,” said Wang. “We are very happy to see the translational potential of this peptide. Overall, our research shows an example of starting from basic discovery to the development of a potential therapeutic reagent.”

Besides helping to shut down seizures, A1R’s natural activation also prevents neuronal damage, which occurs during an epileptic event, where uncontrolled neuronal activity induces the death of some cells, and can deteriorate cognition.

In controls where mice had not been given the A1R-CT therapy, the team observed damage after a seizure. However, the brains of mice treated with A1R-CT showed a pronounced reduction in the death of neurons. The result indicates that the A1R-CT peptide has a neuroprotective effect on the brain.


Nose to the brain, non-stop

Another advantage of Wang’s proposed therapy is that it was designed as a nasal spray.

During a seizure, an individual is incapable of swallowing, which means a pill to help bring the event under control is impracticable. There is also the added hurdle of bioavailability, as when a drug is given as a pill or by injection it reaches the blood before getting to the brain. This means that a high concentration is needed to ensure it makes it to the desired location in significant enough quantity to have an effect.

Administering an anti-seizure drug into the nose allows it to bypass circulation since the nose and brain are connected via the olfactory and trigeminal nerves.

To date, only two nasal spray seizure medications are available: diazepam (Valtoco) and midazolam (Nayzilam). Both silence neuronal activity in a broad, untargeted manner, and though helpful, cause some unwanted side effects.

Wang hopes her team’s A1R-CT peptide will provide a better, targeted therapy to control epilepsy. “There is still a lot of research needed to be done,” said Wang. “But we are working toward bringing the agent into human trials.”


Source: advancedsciencenews.com, Francina Aqosti

Study trains AI to predict optimal anti-seizure meds for new epilepsy patients

Study trains AI to predict optimal anti-seizure meds for new epilepsy patients

The AI model still has a modest prediction accuracy and is slated for a wider clinical trial soon.

An international study led by Monash University has done what could be the world’s first demonstration of an AI model that can predict the optimal anti-seizure medication for newly diagnosed epilepsy patients.


The research team has trained a deep-learning prediction model using clinical information from around 1,800 patients in five health care centers in Australia, Malaysia, China and the United Kingdom. The model is designed by the Monash Medical AI Group and is trained using Monash’s MASSIVE computing facility.

Findings from the study, which was published in the journal JAMA Neurology, showed that the AI model has a “modest” 65% accuracy in predicting the best anti-seizure medication.

The research team is still improving the model by employing more complex information. Later, the enhanced predictive model will be tested in a national, multi-site randomized controlled trial called PERSONAL (Personalized Selection of Medication for Newly Diagnosed Adult Epilepsy). According to Monash, the said trial, which has received a A$2.46 million ($1.7 million) grant from the Australian government’s National Health and Medical Research Council, is designed to predict responses to epilepsy treatment, not actual seizures.


About 70 million people around the world have epilepsy. Until now, there has been a lot of guesswork and experimentation by doctors on which anti-seizure drugs their patients will respond to, said Patrick Kwan, professor and neurologist from the Monash Central Clinical School’s Department of Neuroscience, who is leading the international study.

He added that this trial-and-error process could harm patients more than benefit them. Side effects may range from allergies to psychiatric problems, or in the case of women, birth defects in their babies.

Dr Zhibin Chen, neuroscientist and biostatistician from Monash, said their AI model “will open the gate for personalising the management of epilepsy”.

Currently, the predictive model is intended for adults with new-onset epilepsy who are about to begin their medication. Monash said the model will serve as a basis for future models for people with more established epilepsy.


Research in India has produced novel algorithms that can spot the source of epileptic seizures using a patient’s EEG data. Developed by researchers from the Indian Institute of Technology – Delhi, the head harmonics-based array processing algorithms can pinpoint coordinates of seizure within minutes. These algorithms have been validated in a study that was recently published in Nature Scientific Reports.

Wearable technology is the latest in epileptic seizure detection, such as Epitel’s REMI system, which consists of a wireless EEG sensor that is worn below the hairline and software for providers to review data and monitor seizures. Early this year, the US-based company scored $12.5 million in Series A funding to commercialize its product.


Source: mobihealthnews.com, Adam Ang

Seizure Frequency in Pregnancy More Likely With Focal Epilepsy

Seizure Frequency in Pregnancy More Likely With Focal Epilepsy

Women with focal epilepsy experienced the greatest risk for increased seizure activity in pregnancy and may require closer monitoring in pregnancy and the postpartum period.

“During pregnancy, seizures affect not only the woman with epilepsy, but also her unborn child. They may lead to miscarriages, and they may affect the health and neurodevelopment of the baby,” Paula E. Voinescu, MD, PhD, explains. “Yet, antiseizure medications need to be thoroughly weighed because they may carry developmental risks as well. During the postpartum period, physical and emotional stressors may lower one’s seizure threshold and women may need more medication(s), while the baby’s exposure may continue through breastfeeding.”

For a study published in Neurology, Dr. Voinescu and colleagues examined whether greater seizure frequency in pregnancy and the postpartum period is affected by epilepsy type, seizure location, and antiseizure medications. “Being able to identify the women at risk for seizure worsening and monitoring them closer is important for optimal pregnancy outcomes,” Dr. Voinescu notes.

The researchers used a longitudinal, prospective database to obtain data on pregnant women with epilepsy at a single center. They determined baseline seizure frequency for 9 months prior to conception and whether seizure frequency increased in pregnancy—calculated for every 4-week interval of pregnancy—and the postpartum period. Data was available for 99 patients who had a total of 114 pregnancies between 2013 and 2018.

Focal Epilepsies Associated With Greatest Risk for Increased Seizure Activity

“Women with focal epilepsy have an increased chance of seizure worsening during pregnancy than women with generalized epilepsy,” says Dr. Voinescu. “Our finding that, among patients with focal epilepsy, those with frontal epilepsy are at a dramatically increased risk for seizure worsening despite sufficient therapeutic dose monitoring, is novel.”

Specifically, greater seizure frequency was reported among 21.1% of pregnancies in women with focal epilepsies versus 5.3% of pregnancies in women with generalized epilepsy (OR, 4.70; 95% CI, 1.00-22.00). For women with focal epilepsy, greater seizure frequency was seen more often in frontal lobe epilepsy (OR, 8.00; 95% CI, 2.19-29.21). Dr. Voinescu and colleagues saw no difference in seizure worsening during the postpartum period for women with focal versus generalized epilepsy or frontal versus other focal epilepsy types.

“In plotting the number of pregnancies with heightened seizure frequency for each 4-week interval of pregnancy, we noted a trend for more patients with frontal lobe epilepsy to experience seizure worsening starting at the 20-week age of gestation (Figure),” Dr. Voinescu says. “The meaning of this finding still needs to be investigated. Clinically, this suggests that women may be more vulnerable in the second half of their pregnancy.”

Predictors of Seizure Worsening & Directions for Future Research

Physicians treating pregnant patients with focal epilepsy “should be aware that these women may benefit from closer monitoring,” Dr. Voinescu notes.

“Polytherapy and lack of preconception seizure freedom are additional predictors for an increased likelihood of seizure worsening in pregnancy,” she continues. “Both of these clinical factors may be signals for refractory epilepsy, and these are patients that require closer monitoring as well.”

Women with focal epilepsy—particularly frontal lobe epilepsy—may also require more aggressive medication management, given that the risk for seizure worsening in these patients is higher, according to Dr. Voinescu.

The study notes that frontal lobe seizures often disrupt sleep, and that sleep deprivation may be contributing to the differences the researchers saw. However, the improvement seen in the postpartum period among patients with these types of seizures “goes against this explanation,” and future studies should include measures of sleep.

“Objective measures of how sleep and hormonal factors influence seizures are still lacking,” Dr. Voinescu says. “To be able to improve seizure outcomes during pregnancy for women with frontal lobe epilepsy, studies to investigate the factors driving the observed seizure worsening are necessary.”


Source: physiciansweekly.com, Paula E. Voinescu. MD, PhD

Yale neuroscientists say what makes us human may also make us mentally ill

Yale neuroscientists say what makes us human may also make us mentally ill

Brain cells that are unique to humans are also linked to autism, schizophrenia, and epilepsy, according to new research published in the journal Science.

Scientists and philosophers have long debated what sets humans apart from animals. Now researchers at Yale have come one step closer to unlocking the mystery.

In a study published in Science, they found that the attributes in our brain that make us capable of higher-level cognition also make us susceptible to mental illness.

The researchers compared brain cells from the dorsolateral prefrontal cortex, the part of the brain associated with higher cognition in humans, chimpanzees, macaques, and marmosets. They found 109 cell types that were common in all species. However, five were not, including a microglia (a type of brain immune cell) that was present only in humans. The microglia is present in human brains during development and adulthood, which suggests it is responsible for brain maintenance rather than warding off diseases. At the same time, the microglia contains a gene, FOXP2, that is linked to difficulty with language and other psychiatric diseases such as autism, schizophrenia, and epilepsy.

“Today, we view the dorsolateral prefrontal cortex as the core component of human identity, but still we don’t know what makes this unique in humans and distinguishes us from other primate species.” said Nenad Sestan, a professor of neuroscience at Yale and the paper’s lead author, in a statement.  “Now we have more clues.”


Source: fastcompany.com,  Joshua Fuller

Machine Learning Benefits Epilepsy Patients

Machine Learning Benefits Epilepsy Patients

A new study shows that a deep learning model that accurately predict patient response to antiseizure medications (ASMs) in patients with newly diagnosed epilepsy. The findings were reported in JAMA Neurology.

Choosing the optimal ASM remains in large part a trial-and-error venture for epilepsy patients, as the researchers noted. They said that using this approach “many patients have to endure sequential trials of ineffective treatments until the “right drugs” are prescribed.”

Therefore, investigators in this study sought to construct and validate a deep learning algorithm to discern treatment success of ASMs. In order to do so, they analyzed a cohort of almost 1,800 adults (over half female, median age, 34) treated between 1982 and 2020. The population of interest were followed for at least 1 year or until ASM treatment failure. Treatment success was analyzed using the area under the receiver operating characteristic curve (AUROC), weighted balanced accuracy, sensitivity, and specificity. The main endpoint of interest was complete seizure freedom for the first of year of treatment while taking the first ASM.

According to the results, the machine learning model had an AUROC of 0.65 (95% CI, 0.63-0.67) and a weighted balanced accuracy of 0.62 (95% CI, 0.60-0.64). The model was able to predict the number of pretreatment seizures, presence of psychiatric disorders, electroencephalography, and brain images, and outperformed  2 of the 5 other models based on AUROC.

“In this cohort study, a deep learning model showed the feasibility of personalized prediction of response to ASMs based on clinical information. With improvement of performance, such as by incorporating genetic and imaging data, this model may potentially assist clinicians in selecting the right drug at the first trial,” the researchers concluded.


Source: docwirenews.com, Rob Dillard

FDA approves LivaNova’s device combo to treat drug-resistant epilepsy

FDA approves LivaNova’s device combo to treat drug-resistant epilepsy

LivaNova snagged twin FDA approvals for an implantable generator and a programming system, which make up its Vagus Nerve Stimulation Therapy System for the treatment of drug-resistant epilepsy.

Epilepsy is most commonly treated with antiseizure drugs, but some people with epilepsy have a drug-resistant form of the disorder. Physicians may prescribe lifestyle changes, surgery or a medical device for these patients.

The SenTiva implantable generator and VNS Therapy Programming System—which consists of a handheld wireless device and user interface on a tablet—make up a physician-directed customizable therapy for patients with drug-resistant epilepsy, the company said in a statement.

Sentiva is designed to deliver simulation to the vagus nerve to stop a seizure, as well as to to prevent seizures before they start, the company said. The device also records information associated with seizures, including body position and variations in heart rate.

“We created SenTiva and the accompanying VNS Therapy Programming System based on feedback received from patients and physicians to ensure ease of use, better patient care and cost effectiveness,” said Jason Richey, LivaNova’s president of North America and general manager of its neuromodulation business, in the statement.

“In addition, SenTiva’s compact size allows for a more comfortable experience for pediatric patients, which is beneficial now that VNS Therapy is the first and only system that is FDA approved for drug-resistant epilepsy in children as young as four years of age,” Richey said.


Source: fiercebiotech.com, Amirah Al Idrus

Challenges for Low Middle-Income People with Epilepsy during the Covid-19 Pandemic Lessons Learnt, Call for Action

Challenges for Low Middle-Income People with Epilepsy during the Covid-19 Pandemic Lessons Learnt, Call for Action



The Covid-19 pandemic impacted the care of people with epilepsy (PWE). Several online surveys were conducted but there is limited data regarding impact on low-income PWE from lower-middle income countries (LMICs) who have no access or ability to answer online surveys. The purpose of this interview was to understand the challenges faced by low-income PWE during the lockdown phase of the pandemic.


PWE visiting the epilepsy specialty outpatient department of a tertiary referral government hospital to avail of subsidized services were interviewed. In the interview, they discussed challenges in obtaining medical care, the impact on wellbeing, employment, and vaccination status during the lockdown phase of the pandemic.


Out of the 214 PWE interviewed, 20.6% had increased seizure frequency, 28.9 % did not have access to medication mainly due to travel restrictions, 30.5% reported lack of availability of medication and 50% were not able to afford the medication mainly due to loss of income. 51% were unable to have follow-up consultations. 36% reported worsening of mood and some reported impact on other aspects of wellbeing. The impact on wellbeing was significantly associated with an increase in seizure frequency. The study revealed hesitation related to vaccines in the majority and expectations of financial support by the government and assistance for procuring medication. There was a lack of awareness about telemedicine services and the same was not adequately offered by government hospitals.


The study underscores the need to learn lessons from the challenging experiences of low-income PWE and create an action plan for the future to address the issues of lack of affordability of medical care and access to telemedicine. It is critical that the care of the marginalized, underrepresented PWE from lower-middle income countries is not neglected during a pandemic.


Source: onlinelibrary.wiley.com

Trauma and non-epileptic seizures: patients need care

Trauma and non-epileptic seizures: patients need care

ALTHOUGH childhood trauma has long been linked with neurological disorders such as psychogenic non-epileptic seizures (PNES), a recent study has found the severity of trauma is also a key factor in diagnosis.

A Melbourne study, recently published on pre-print server MedRxiv, found patients with PNES reported greater frequency of childhood trauma than patients with epilepsy. The authors also found that trauma severity, rather than the presence or absence of trauma, should be examined when diagnosing PNES . (The research has yet to be peer-reviewed and should not be used to guide clinical practice.)

“Our findings that patients who experienced more severe childhood trauma are at higher risk of PNES regardless of the trauma subtypes, is supportive of the concept that rather than a specific childhood trauma type being predictive of later PNES diagnosis, subjective childhood trauma of any kind places patients at higher risk of PNES diagnosis than epilepsy in a linear fashion,” wrote the authors, led by Tianren Yang from the Melbourne School of Psychological Sciences.

According to Dr Adith Mohan from the UNSW Sydney (not a study author), the subjective impact of trauma on an individual is an important practice point for clinicians.

“You can have two individuals with seemingly similar traumatic experiences. But the individual that has a greater level of trauma severity is more vulnerable than the one that doesn’t on the basis of the findings from this study. That serves to highlight the individual differences between people in terms of the impact of a traumatic event,” he said.

One of the study authors, Associate Professor Charles Malpas from the University of Melbourne, said they were aiming to find out whether particular kinds of childhood trauma placed patients at increased risk.

“We ended up looking at five different kinds of childhood trauma, including neglect and abuse, separating those two out and then also looking at sexual abuse separately,” he told InSight+.

They thought that abuse may report higher in the patients with PNES rather than neglect alone. And based on their clinical experience, they thought a history of sexual abuse would be highly represented in the PNES group.

“I think the surprising thing was we didn’t find evidence that one particular kind of trauma was reported more in the PNES group. We thought we’d see an interesting profile. But instead, what we saw was all kinds of trauma were rated as occurring more frequently in childhood in the PNES groups. That was unexpected,” he said.

Aetiology of PNES

PNES is a subtype of functional neurological disorder (FND), a collection of neurological symptoms that can’t be explained by a disease or anatomical abnormalities.

According to Dr Mohan, the seizures can resemble epilepsy.

“An epileptic seizure represents a seizure phenomenon that relates to abnormal electrical discharges in the brain,” he explained.

“If you have somebody that has a non-epileptic seizure, you’re essentially describing somebody that has a seizure-like event at presentation, though these events are not driven by epileptic discharges in the brain,” he said.

The mechanisms that cause these seizure-like events are yet to be fully understood; however, there is a consistent link with traumatic events.

“Approximately 90% of people with PNES report having experienced traumatic events across their lifetime compared to 74.9% in the general population and 85% in epilepsy patients,” Yang and colleagues wrote.

There still needs to be more work on why that link occurs.

“It could be that there are fundamental brain changes that occur in people who experienced childhood trauma that don’t occur in others. One of the problems is that those brain changes are actually a risk for organic epilepsy as well,” Associate Professor Malpas explained.

Diagnosing PNES

Diagnosing PNES can be difficult. There is an average of 7–16 years delay in diagnosis after seizure onset and often patients are misdiagnosed with epilepsy (here and here).

In the article by Yang and colleagues, data were collected from two cohorts: a retrospective cohort (203 people) and a prospective cohort (209).

Each cohort were monitored via video electroencephalogram (EEG) and completed the Childhood Trauma Questionnaire as part of their clinical practice. All patients were assessed by a multidisciplinary team of neurologists, neuroradiologists, neuropsychiatrists and neuropsychologists to reach a consensus diagnosis.

Video EEG is considered the diagnosis gold standard, but access is difficult for many.

“A video EEG is when someone comes in for a prolonged period of EEG monitoring where they have EEG electrodes attached,” Dr Mohan explained.

“In an ideal scenario, they would have the seizure-like event and you would confirm that the event wasn’t accompanied by epileptic discharges in the brain. That confirms that the event is non-epileptic. Obviously, there are issues with access to that sort of investigation. It depends on where the patient is and who they see”

Most video EEG monitoring units are in large hospitals in major centers.

Treating PNES

Once a patient has been diagnosed with PNES, it’s important they’re given the news appropriately.

“We have put a lot of work into that to make sure it’s not like ‘you don’t have epilepsy, you’re faking, off you go’. The normal approach is we break it to them as ‘this is good news, you don’t have an organ level brain impairment,’” Associate Professor Malpas said.

However, then an explanation is needed.

“We talk about things like the connection between the mind and the body, and how psychological conditions can manifest physically. And that quite often will bring up the trauma discussion. That’s often when things click for patients,” he said.

There are several therapeutic options for patients and often it’s a multidisciplinary approach depending on the person’s symptoms.

“It is about having psychological intervention and tailored allied health intervention broadly; having the involvement of an occupational therapist, physiotherapist and psychologist and addressing the patient’s specific needs, including their social and functional needs,” Dr Mohan explained.

According to Associate Professor Malpas, patients are often reluctant to see a psychiatrist. Often a neurologist isn’t appropriate as they specialize in physical disorders of the brain.

“We have a lot of luck with neuropsychologists that sit somewhere in between. Patients are often quite willing to go to those specialists and those specialists are trained in this area,” he said.

Another factor to consider is comorbid conditions.

“A number of patients may have trauma histories and have other psychiatric illnesses that affect them. That’s really where medication comes into it. The use of medication is to address comorbidity. If someone has pain, then you manage their pain, if somebody has depression, you manage their depression,” Dr Mohan said.

A previous study found that patients with PNES have a standardized mortality ratio that is 2.5 times higher than the general population. This emphasizes the importance of a proper diagnosis and early intervention.

“We’re in a phase at the moment where we’re taking PNES much more seriously as a condition. People say, ‘well, they’re just crazy, it’s all in their head’,” said Associate Professor Malpas.

“No. This is actually a serious thing, and these patients need care.”

Source: insightplus.mja.com.au, CAITLIN WRIGHT

Mortality 50% higher in veterans with drug-resistant epilepsy vs. general population

Mortality 50% higher in veterans with drug-resistant epilepsy vs. general population

Mortality rates were significantly higher among veterans with drug-resistant epilepsy compared with other veterans and the general United States population, researchers reported in JAMA Neurology. Mortality rates were significantly higher among veterans with drug-resistant epilepsy compared with other veterans and the general United States population, researchers reported in JAMA Neurology.

According to the authors, epilepsy affects about 70 million people globally. Most epilepsy patients can manage seizures with anti-seizure medications, but up to 36% of patients have drug-resistant epilepsy.

Zulfi Haneef, MBBS, MD, associate professor of neurology at Baylor College of Medicine, and colleagues aimed to examine the association of utilization of care with mortality in U.S. veterans with drug-resistant epilepsy.

Researchers conducted an observational cohort study between Oct. 1, 2013, and March 31, 2020, and included 9.6 million U.S. veterans, of whom 164,435 (1.7%) had epilepsy and 55,571 (33.8%) of those had drug-resistant epilepsy. Drug-resistant epilepsy was defined as the use of two or more anti-seizure medications.

Among veterans with drug-resistant epilepsy (mean age, 58.3 years; 88.9% male), standardized mortality rate was 1.5 (95% CI, 1.47-1.53) compared with the general U.S. population and 1.56 (95% CI, 1.53-1.59) compared with all veterans within the Veterans Health Administration.

Researchers further reported that 81.1% of patients with drug-resistant epilepsy had been seen by a neurologist, but only 15% had comprehensive epilepsy evaluations, and 6% were monitored for epilepsy. Nearly 50% of patients underwent electroencephalography testing and two-thirds received an MRI.

According to the study, lower mortality was linked with increased utilization of care, including evaluation at a neurology clinic or an epilepsy center of excellence and diagnostic testing.

“Mortality among veterans is generally lower than civilians due to the so-called healthy soldier effect, presumed to be due to factors including the initial physical screening for healthy recruits, emphasis on physical fitness during service and better health care during and after service,” the authors wrote. “Thus, our observation that mortality was increased among veterans with [drug-resistant epilepsy] compared to the U.S. population was notable.”


Source: healio.com, Ken Downey Jr.

‘As soon as I get up, my normal vision is gone’: Woman with epilepsy left practically bed-bound by rare focal seizures causing permanent triple vision

‘As soon as I get up, my normal vision is gone’: Woman with epilepsy left practically bed-bound by rare focal seizures causing permanent triple vision

‘It’s quite hard because I’m so bubbly and energetic, but most of the time now I’m actually in bed,’ explains 27-year-old Emilyjane Vernau, from Tillingham.

Almost a decade ago her life was turned upside down when she was diagnosed with epilepsy.

She adds: ‘I don’t think people understand the dangers of epilepsy, because it’s actually a deadly illness – people think it’s just seizures. Although it’s scary to witness a seizure, they don’t realize what it’s doing to brain cells and the body – and people actually die from epilepsy every day.

‘Epilepsy is not just seizures, or a silly thing, it’s something that can cause other life-long conditions.’

Emilyjane was diagnosed with epilepsy when she was almost 20, after her partner noticed she was having seizures during the night – leaving her with sore muscles in the morning and frequently unable to work the next day.

After getting an epilepsy diagnosis, Emilyjane was told she wouldn’t be able to continue working as a lifeguard and first responder.

The next two years she trialed around six or seven different medications to find the right one to stop her seizures and began to pursue a career as an actress.

However, Emilyjane soon starting experiencing unsettling focal seizures – where she would see multiple of the same thing.

She recalls the first time this happened, saying: ‘I was in my shed sitting in my chair talking and I suddenly saw three or four of whatever I was looking at – so my vision just tripled.

‘Then I just burst into tears because I thought I was going blind. This had never happened to me before. I had no idea what was going on. I was absolutely terrified. It was about 10 or 15 minutes, and then it cleared up. Then the next week, it happened again.

‘For around a year, around two days in the week I had these episodes for 15 to 20 minutes.’

But these episodes slowly started to progress to last multiple weeks at a time.

Two years on and Emilyjane is now practically bed-bound because she experiences these focal seizures every single day.

‘As soon as I get up. That’s it. My normal vision is gone,’ she adds.

‘I’ve walked into the road and in front of cars. I’ve fallen up and down the stairs. I’ve bumped into people because I don’t know which one’s which – because there’s seven or eight people.

‘It’s awful. But I’m trying to laugh about it because I’m such a happy person. Well, I was. I have a cry every day but then I’m just right way back to it. Back to life.

‘I think it just shows there are so many different types of epilepsy, because I had never heard of it before.’

As a result of these focal seizures, the 27-year-old has been forced to put her acting career on hold.

She is also now dealing with the physical consequences of epilepsy and seizures – including kidney problems and chronic fatigue syndrome. Not to mention the huge emotional impact the condition has had on her mental health.

‘My mental health is absolutely rock bottom because of this,’ she says. ‘And this basically all started from stress – my epilepsy was caused by stress.’

Emilyjane explains that her epilepsy was initially brought on by stress and PTSD from extreme bullying that she experienced during her younger years.

‘Every single day in school I was bullied for having ginger hair – and it was actually by my friends as well,’ she continues.

‘I would get it every day for around four years, and I actually left to be homeschooled because I just couldn’t take it any more.

‘I was told to kill myself and that “gingers shouldn’t exist” or “they’re ugly” or “there’s nothing here for a ginger, so you may as well kill yourself” – and this was from my “friend.”

‘The epilepsy was caused by the stress. I think it was PTSD from all of the bullying.’

Emilyjane is now regularly undergoing tests at St Bart’s – with both neurologists and neurosurgeons trying and get to the bottom of her condition, what’s causing it, and how it can be treated.

Despite these daily challenges the 27-year-old actress stresses she’s trying to stay positive and is taking one day at a time.

Emilyjane only hopes her story will help shed light on epilepsy and its multifaceted nature.

‘I would love to raise awareness for bullying as well,’ she adds.

‘Last year I was 26 and I was in a mental health unit because of bullying that happened when I was 11-15. That’s initially what caused epilepsy and that epilepsy has caused two careers to go down the drain: first responding and pool management. It’s literally taken my life away.’

But she hopes it will encourage others to take epilepsy – and its repercussions – more seriously, and to be more aware of it in daily life.

‘I honestly have no words for how much it really takes everything away,’ she adds.

‘It’s so important for people to just take an hour out of their day, out of their entire life, to just learn a little bit about epilepsy to know what to do if someone has a seizure – just an hour.

‘You will remember what you’ve learned for the rest of your life.

‘You can help so many people because – some people may just drop and some people may pass out and then have seizures – but you’ll know what to do if you just simply have one hour of learning.’


Source: metro.co.uk, Lizzie Thomson

If Your Dog’s Having a Seizure, Here’s What You Should Do

If Your Dog’s Having a Seizure, Here’s What You Should Do

(August 26th is National Dog Day)

Few things are as alarming for dog owners as witnessing your pup having a seizure. These situations can make us feel helpless and out of control, but there are steps you can take to help your dog recover safely. We spoke with AKC’s Chief Veterinary Officer Dr. Jerry Klein about seizures in dogs to find out what you should do if you witness one.

What Causes Seizures in Dogs?

“First of all, a seizure is a sign, not a disease,” Dr. Klein explains. “It is a manifestation of some abnormal motor activity occurring in the brain.” There are a variety of causes, the most common of which is idiopathic epilepsy. While veterinarians are not entirely sure what causes epilepsy, there is evidence to suggest it’s genetic. Other causes of seizures in dogs include electrolyte or blood abnormalities, such as low blood sugar, severe anemia, cancer, brain tumors, trauma to the brain, metabolic diseases, and exposure to toxins.

What Do Seizures Look Like?

Dr. Klein notes that it’s not always easy to tell if your dog is having a seizure. Whole-body seizures, called Grand Mal seizures, cause your dog’s entire body to convulse. While these are easier to spot, some seizures may be localized, such as a facial tremor, or present as a sudden onset of rhythmic movements or actions, like unusual barking. Regardless of the type of seizure, most animals recover quickly, but it can feel like a long time for the owner who’s witnessing it.

What Should You Do if Your Dog Is Having a Seizure?

“There are a few things to remember when you’re with an animal that is having a seizure,” Dr. Klein explains. Following these tips will help keep you and your dog safe until the seizure is over:

  • Remain calm. This can be difficult, but your dog’s health depends on your ability to focus.
  • Check the time. Knowing when your dog’s seizure started and how long it lasted will give your veterinarian important information about your dog’s symptoms. If there is someone else in the room, ask him to film the seizure with his phone so that you can show it to your veterinarian later.
  • Know that your dog is not conscious or in pain, even if he sounds or acts like he is.
  • Dogs (and people) don’t swallow their tongues during seizures. Do not try to grab his tongue, as you could get bitten in the process.
  • Seizing dogs may froth at the mouth or drool excessively, but this does not mean they have rabies.
  • To prevent your dog from hurting himself during a seizure, keep him away from stairs, cushion his head, and gently hold and comfort him until he begins to regain consciousness.
  • Some dogs may urinate or defecate. This does not make the seizure better or worse.
  • Seizures that last more than 2-3 minutes can put dogs at risk of hyperthermia (overheating). You can try cooling your dog by applying cold water or wet towels around his groin, neck, paws, and head, but it’s crucial that you get your dog to a veterinarian ASAP.
  • Always call your veterinarian or emergency veterinarian after your dog has a seizure, even if your dog seems to be acting normally.
  • Start a journal or keep a note on your phone documenting your dog’s seizures, keeping track of the date, time, and length. This will help your veterinarian figure out if there is a pattern to your dog’s seizures.
  • Dogs that have more than one seizure in a 24-hour period are experiencing “cluster” seizures. This requires immediate veterinary attention, and you MUST take your dog to a veterinarian right away for examination.


Source: akc.org, Anna Burke

New method of examining the brain’s electrical signals could hold the key to better treatment of epilepsy and schizophrenia

New method of examining the brain’s electrical signals could hold the key to better treatment of epilepsy and schizophrenia

Researchers at Aston University are exploring new ways to ‘listen’ to and record electrical signals emitted from brain cells, which could be used to help treat the conditions

A new method of examining the brain’s electrical signals could hold the key to better treatment and understanding of conditions like epilepsy and schizophrenia.

Researchers at Aston University are exploring new ways to ‘listen’ to and record electrical signals emitted from brain cells, which could be used to help treat the conditions.

Dr Petro Lutsyk, lecturer in electronic engineering and systems in the College of Engineering and Physical Sciences and member of Aston Institute of Photonic Technologies (AIPT), together with Dr Stuart Greenhill, senior lecturer in neuroscience in the College of Health and Life Sciences and member of Aston Institute of Health and Neurodevelopment (IHN), have been awarded £100,000 by the Royal Society to conduct the project Nanomaterial Webs for Revolutionary Brain Recording.

Currently, epilepsy patients who can’t be helped by drugs may undergo brain surgery in order to prevent seizures, removing the part of the brain that is the ‘focus’ of the seizures.

Dr Greenhill said: “The research project will use newly developed nanomaterials to keep samples of brain healthy and active for far longer than current technology allows, whilst recording the activity of the tissue.

“This allows more understanding of what generates epileptic seizures and opens up new avenues for drug development, meaning fewer surgeries may be needed in the future.

“Eventually, the technology may lead to new and better ways of recording from patients’ brains before surgery.”

The two-year project will see materials and electronic engineering applied to translational neuroscience research.

The grant is from the Royal Society APEX Awards scheme (Academies Partnership in Supporting Excellence in Cross-disciplinary research award) which offers researchers with a strong track record in their area an opportunity to pursue interdisciplinary research to benefit wider society.


Source: eurekalert.org

Epilepsy Patients Set To Benefit From Non-Invasive, Real-Time Molecular Breath Analysis

Epilepsy Patients Set To Benefit From Non-Invasive, Real-Time Molecular Breath Analysis

Deep Breath Intelligence is pleased to announce the launch of DBI-EPIbreath®, a simple breath test that can provide reliable estimates of circulating concentrations of the antiseizure medication (ASM) valproic acid to aid patient management. This innovative diagnostics tool will be showcased at the European Epilepsy Congress taking place in Geneva, Switzerland, from the 9th to the 13th of July.

Fast diagnosis and quick medication decisions are essential for epileptic seizure control. Standard therapeutic drug monitoring (TDM) approaches are based on measuring drug concentrations in plasma or serum, but this has limitations, and it can take several days to turn around results. DBI-EPIbreath® is the first CE-IVDD certified, non-invasive test that allows real-time measurement of the total and free concentrations of valproic acid in a breath sample, delivering results in just 10 minutes. The test combines secondary electrospray ionization-high resolution mass spectrometry (SESI-HRMS) with sophisticated bioinformatic tools to assist in the management of ASM dosing regimens. Patients simply exhale into a SESI-HRMS instrument, and the data is analyzed using machine learning algorithms. DBI-EPIbreath® also predicts the likelihood – low, moderate or high – of drug response, as well as providing a side effects risk score, helping clinicians to identify whether a patient is likely to benefit from the treatment and/or suffer from unwanted side effects.

Tests can be performed as often as necessary, making the technique an ideal fast and non-invasive diagnostics tool to complement blood testing. It is particularly advantageous for pediatric patients – where blood draws can be challenging – or if more frequent testing is required for any reason, such as individuals who are non-responsive or develop pharmaco-resistance. This machine learning approach has potential to be expanded to include other ASMs in the future, enabling many more people with epilepsy to benefit from fast, non-invasive TDM.

About Deep Breath Intelligence

We rethink breath. Deep Breath Intelligence is a healthtech company unleashing the huge potential of analyzing exhaled breath by applying machine learning algorithms. We provide non-invasive solutions for early diagnosis of diseases and therapeutic drug monitoring – enabling better treatment by precision medicine. Our first product, DBI-EPIbreath®, is a CE-IVDD certified test for drug monitoring in epilepsy. We are working hard today on developing a broad range of products in different disease areas to take future precision medicine to the next level and improve people’s health.


Source: einnews.com, Agility PR Solutions

Why Are Epileptic Seizures Hard To Diagnose? Here Are The Early Signs To Look For

Why Are Epileptic Seizures Hard To Diagnose? Here Are The Early Signs To Look For

Recurring seizures are the primary symptom of epilepsy. However, the symptoms may change depending on the kind of seizure a patient is suffering from.

Epilepsy is a chronic non-communicable central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. Seizures can be defined more simply as brief episodes of uncontrollable movement that can involve the entire body (total) or just a portion of it (partial), and which are typically accompanied by a loss of consciousness and the ability to control bowel or bladder function. All ages, races, and ethnic groups, as well as all genders, can be afflicted by epilepsy. Let’s understand more about this condition from Dr Nikunj Mittal, Consultant Neurosurgery, Manipal Hospitals, Ghaziabad.

According to Dr Mittal, Seizures do not always indicate epilepsy, though. During the withdrawal from alcohol, a brain that is otherwise healthy may experience seizures. An abrupt drop in blood flow can also cause seizure-like symptoms, which can lead to fainting or even panic attacks. It can be hard to diagnose epilepsy quickly as these events can also have similar symptoms. Epilepsy-related seizures, on the other hand, are frequently unpredictable and unprovoked. Brain tumors, infections, strokes, traumatic brain injury, autoimmune diseases, developmental abnormalities, and genetic predispositions are some of the underlying abnormalities that can cause the onset of epileptic seizures. Epileptic seizures are often not confirmed until a person has had more than one or two episodes of seizure.

Symptoms of Epileptic Seizures

Recurring seizures are the primary symptom of epilepsy. However, the symptoms may change depending on the kind of seizure a patient is suffering from. Below mentioned are some early signs and symptoms of epileptic seizures:

  1. Temporary loss of consciousness
  2. Muscle jerking, loss of tone, and uncontrolled muscle action
  3. Temporary confusion, thinking gets slowed, communication and comprehension issues
  4. Change in senses
  5. Feeling of numbness
  6. Difficulty in understanding or speaking
  7. Increased breathing or heart rate
  8. A feeling of terror, dread, or anxiety
  9. Changes in movement of hands and legs

How Can Seizures Be Diagnosed?

Diagnosis depends on the medical history of the patient and on the evaluation of abnormal patterns of electrical activity in the brain. Your doctor may suggest several tests to diagnose epilepsy and determine the cause of seizures. Your evaluation may include:

  1. A neurological examination, where the doctor will assess your behavior, motor abilities, mental function, and other areas to diagnose your condition and determine the type of epilepsy you may have.
  2. Blood tests, where the doctor may take a blood sample to check for signs of infections, genetic conditions, or other conditions that may be associated with seizures.

For further investigation, the doctor may also suggest some tests for a detailed diagnosis. These tests may include:

  1. Electroencephalography (EEG)
  2. Magnetic resonance imaging (MRI)
  3. Positron emission tomography (PET)
  4. Computerized tomography (CT scan)
  5. Single-photon emission computerized tomography (SPECT)

How Can Epileptic Seizures Be Treated?

When it comes to the treatment process for epileptic seizures, take a look at what Dr Mittal has to say:

  • Even though many causes of epilepsy are uncontrollable and unavoidable, they can still be treated. The treatment of epilepsy begins with medication. If medications do not treat the condition, then the doctors may propose surgery or another type of treatment therapy.
  • Along with treatment, it is important to make lifestyle modifications like getting enough sleep, as lack of sleep can trigger seizures. Regular exercise is physically healthy and can also help in reducing stress and anxiety.
  • One should opt for a balanced diet, maintain a healthy weight, and drink enough water. The brain can be harmed by alcohol and other illicit substances, which can result in epilepsy. So, one should avoid consuming excessive tobacco and liquor.


Source: thehealthsite.com, Satata Karmakar


Beloved Scots gran dies in street after epileptic seizure as partner desperately tried to resuscitate her

Beloved Scots gran dies in street after epileptic seizure as partner desperately tried to resuscitate her

Jamie Low, 42, had been walking the short distance home from a friend’s house in Dundee when she collapsed.

A beloved mum of two died in the street after suffering an epileptic seizure while walking home from a friend’s house in Dundee.

Jamie Low, 42, collapsed on Saturday night in front of her partner Ally Ramsay who tried desperately to resuscitate her after she stopped breathing. An ambulance was called but despite the valiant efforts of her partner and paramedics who gave her CPR, Jamie was pronounced dead.

She leaves behind her children Courtney Ramsay, 22, and Connor Ramsay, 20, who are now having to plan her funeral.

Speaking to the Record, Courtney said her mum, who was gran to her two daughters, had been “a kind loving person that would do anything for anyone”.

She said: “Mum had dealt with epilepsy most of her life – since she was about 16. She was at her pal’s house on Saturday night and came out with her friends to go home, and took an epileptic fit.

“My dad came down the road and tried to save her – the paramedics tried saving her afterwards. But it was obviously too late.

“He did CPR, but she was pronounced dead at the scene. She was really young, too young.

“We had a lot of disputes, but that’s what mothers and daughters do. When my brother and I grew up it was the four of us – me, my brother, my mum and my dad. We were close.”

Jamie had been in hospital the previous weekend following an epileptic episode, for which she had been successfully treated. Her devastated family say they are still processing their sudden loss.

The family has launched a GoFundMe page to help cover the costs of Jamie’s funeral. While they are likely to be eligible for the Scottish Government’s Funeral Support Payment, the benefit will not cover the full costs.

Courtney added: “I’ve got two young children of my own under the age of two and with them and the cost of living going up I’ve not got any savings. I’m a stay at home mum and I haven’t got any money put away for this.

“We’ve raised some money for her and it’s helped us a good bit. I’m just trying to keep my mind off of everything for the girls at the moment.”


Source: dailyrecord.co.uk, Jon Brady