Experts and patients create guide for treating people with epilepsy

Experts and patients create guide for treating people with epilepsy

Epilepsy care should be more local, with people given an expert “point of contact”, and decision making should be better shared between patients and doctors, according to the National Neurosciences Advisory Group (NNAG).

The NNAG’s “optimal clinical care pathway” for adults with epilepsy has been developed by organizations including Epilepsy Action.

A clinical pathway is the journey people with epilepsy take through NHS services.

The pathway for people with epilepsy was developed by the NNAG. The NNAG is a collaboration of professionals and patient groups.

The pathways set out what good treatment, care and support should look like. It is part of a set of care guidelines for many neurological conditions.

Following a six-week public consultation, the NNAG emphasized the need for people with epilepsy to have a “first point of contact” with an expert.

According to the group, care should be local when possible. It said patients needed to be seen in a regional neuroscience center rather than tertiary and secondary services, which could be far from their homes.

The group said the improved pathways would also create efficiency savings for the NHS while improving the quality of epilepsy services.

It added that another barrier the new pathways would overcome was the inability of centers to receive and store patient information, including video monitoring. It said an increased focus on data sharing or a national epilepsy register would facilitate communication between clinicians and improve care for people with epilepsy.

The document also outlines what “good practice” should look like. For instance, it says: “After a first suspected seizure, a patient should be referred to a first seizure service.”

Among the useful resources to improve patient care, the document references a number of  Epilepsy Action led-projects, including Step Together – Integrating care for children, young people and adults with epilepsy and learning disability, and the Step Together Benchmarking Toolkit – Service Evaluation.

Alison Fuller, director of health improvement and influencing at Epilepsy Action, said: “We are delighted to be a part of such an ambitious project to improve the quality and delivery of epilepsy services.

“We’re hoping the recommendations outlined in the new epilepsy pathway will be adopted widely, to improve the quality of care people with epilepsy receive, and streamline processes for healthcare providers at the same time.

“We will continue to work closely with clinicians and other organizations to optimize the level of care patients receive, and define ‘what good looks like’ for people with the condition.”

Clinicians supporting the pathway include Tony Marson from Liverpool’s Walton Centre, Rohit Shankar from the University of Plymouth, Melissa Maguire from Leeds Teaching Hospitals NHS Trust and Rhys Thomas from Newcastle University.

Pathways have also been developed for multiple sclerosis, neurological autoimmune disorders, motor neurone disease and more.


Source:, Grace Wood

National shortage of epilepsy medication putting thousands at risk

National shortage of epilepsy medication putting thousands at risk

A national shortage of epilepsy medication is putting patients’ safety at risk, consultants have said.

Medical professionals are becoming genuinely concerned as ever more frequent supply issues continue to bite tens of thousands of sufferers.

According to the Epilepsy Society charity, over 600,000 people in the UK have the condition, or about one in every 100 people.

Among them is Charlotte Kelly, a mother of two living in London who has had epilepsy for over 20 years. She must take two tablets a day to manage her condition but issues with supply have forced her to start rationing her medication.

Speaking to Sky News, Ms Kelly told us of the fear surrounding the restricted access to the medicate she needs to survive.

“I’m scared. If I’m truly honest, I’m scared knowing that I might not get any medication for a few weeks, or a couple of months, I just don’t know when.

“It’s scary to know that I have to worry about getting hold of medication. I do believe that something needs to happen very quickly because even if it’s pre-ordered there’s no guarantee you’re going to get it.

“The anxiety of worrying about if you’re going to get your medication builds up and the worry alone can cause seizures.”

It’s added worry knowing her chances of having seizures increases her reliance on her 14-year-old daughter who often has to make the 999 calls to get help for her mum.

She was due to get a renewed supply in December to get her through the next two months.

But there’s no guarantee of when any of it will next be in stock.

“I get very, very frustrated. There’s times when I’ve had to call five, six different pharmacies and the more you’re calling, and you’re not hearing what you need to hear.

“You’re getting more and more frustrated and then you’re getting upset and it’s like where do we stand? Epilepsy is a very, very, very common condition.

“Over 600,000 people in the UK alone, have epilepsy. And when but yet we feel like we are just a hidden condition.

“People just don’t understand that if I don’t have my medication I could have multiple seizures, and that could lead to hospitalization, and at worst case, death.”

Kay Dhillon, a pharmacist in west London, showed me the near-empty cubby hole and cupboard which is usually full of epilepsy medication as she told Sky News she started noticing products were flagging and being out of stock three weeks ago.

She describes it now as being at crisis point.

“It is a crisis. You don’t know how many epilepsy seizures or tablets the person can have or how severe their epilepsy is. Because obviously, they’ve been taking it every single day for so many years and it just stops one day, or even if they miss a dose, it’s a big deal.”

Ms Dhillon says she has been given no indication of when the drugs will be back in stock.

She says she’s been managing so far by helping patients access resources shared between four pharmacy branches but says everyone’s supplies are running low.

“It seems like it’s a manufacturing issue. Obviously, patients are asking – how can you not know when it will be back in stock?

“It’s a shame because patients rely on you for this and they shouldn’t have to go looking around for their daily medication.”

Speaking to Sky News, Professor Ley Sander, director of medical services at the Epilepsy Society, says the supply concern is not just on the minds of patients but those in the industry too.

“It might be that we need a strategic reserve for storage of drugs, we might have to bring drugs over from other parts of the world to avoid this from recurring.

“We’re not at that point yet, but this is an urgent issue.”

In a statement provided to Sky News, a Department of Health and Social Care spokesperson said: “We understand how frustrating and distressing the possibility of medication shortages can be and are aware of supply issues with the epilepsy medicine carbamazepine. These have been communicated to the NHS, with information and advice provided on how to manage patients affected by these issues.

“The department is working closely with suppliers, NHS England, the Medicines and Healthcare products Regulatory Agency, the devolved governments and other stakeholders to ensure patients continue to have access to the treatments they need. Through this work, problems with carbamazepine should be resolved by early February.”

It is those like Charlotte who are left bearing the brunt till then.



How Captain and Tenille inspired a dark Joy Division anthem

How Captain and Tenille inspired a dark Joy Division anthem

Joy Division‘s most iconic single, ‘Love Will Tear Us Apart’, was released in June 1980, and tragically, within a month, lead singer Ian Curtis took his own life at the age of 23. Battling epilepsy, depression, and the breakdown of his marriage, Curtis was discovered dead in his kitchen just before the band’s inaugural North American tour.

As a result, Curtis didn’t get to enjoy the immense success that Joy Division would achieve. The single marked Joy Division’s first chart success, reaching 13th on the UK Singles Chart and claiming the top spot on the UK Indie Chart. The tragic death of the singer brought attention to ‘Love Will Tear Us Apart’, as its melancholic lyrics became forever linked to Curtis’ untimely passing.

Although the song has since become one of the best contributions to the realm of post-punk, Curtis originally wrote the song as a response to the Captain and Tennille’s track ‘Love Will Keep Us Together’. Disillusioned by his deteriorating marriage, the instability in his life, and escalating health problems, the musician wrote the melancholic track.

Unlike the version sung by a married couple, “Captain” Daryl Dragon and Toni Tennille, which was written as an affirmation that they will always be together, Joy Division’s darker, more sinister take revolved around Curtis’ own personal struggles during a time when “resentment rides high, but emotions won’t grow.”

Strangely, however, the song’s appeal remains attached to its upbeat arrangements. As bassist Peter Hook explained: “It’s quite strange really because the lyrics are very dark, but I find the song to be very uplifting – no other Joy Division song works like that. People go nuts for that song when we play it live, but it really is quite dark.”

Its paradoxical nature made it the perfect Joy Division anthem, akin to the highs and lows of Curtis’ real life. ‘Love Will Tear Us Apart’ is often celebrated as being one of the best, most calculated additions to rock. The title was engraved on Curtis’ gravestone at Macclesfield Cemetery to commemorate its significance.

Although Curtis’ legacy endures through the music he crafted during his brief life, ‘Love Will Tear Us Apart’ stands out as the band’s most poignant work due to the circumstances surrounding its release and Curtis’ subsequent death. For drummer Stephen Morris, it’s still difficult to revisit. “In retrospect, when you listen to it in light of what happened, it seems bloody obvious,” he said. “I honestly didn’t realize that he was writing about himself.”


Source:, Kelly Scanlon

Floridians struggling with illness decry the possibility of the state banning delta-8 hemp products

Floridians struggling with illness decry the possibility of the state banning delta-8 hemp products

That provision is part of a comprehensive proposal to reform hemp laws in Florida that have been the law since 2019

Kassie Stuart was 17 years old when she was diagnosed with idiopathic genetic epilepsy, which can result in intense seizures.

Now 23, the Tallahassee resident says she’s tried 25 different medications to deal with her illness but nothing helped until she discovered delta-8 THC nearly four years ago. That’s a cannabinoid found in the cannabis plant that hemp entrepreneurs created after the passage of the 2018 U.S. farm bill, which made the use of hemp extracts legal in the U.S.

Since she started using that product, she’s gone from having a couple of seizures a day to suffering from only one or two a year.

“I had my medical [marijuana] card for a little bit,” she says. “It was helping, but it wasn’t giving me the medical relief that I needed when I was introduced to delta-8 and it really helped me. I feel like if I’m ‘spazzy’ or ‘seizey’ or if I have a really bad headache, I can just hit my [vape] pen a couple of times or eat some edibles, and it goes away in a couple of minutes.”

However, if a bill that would regulate hemp products (HB 1613) is approved as currently written by the Florida Legislature, Stuart and others would no longer be allowed to legally consume such products. The Senate’s version, SB 1698, also would ban delta-8.

Delta-8 has psychoactive and intoxicating effects, according to the FDA. It’s currently banned in 17 states, according to the National Cannabis Industry Association. Still, the issue has become of concern in Florida because of people who swear that delta-8 provides medicinal benefits that other products do not.

Manatee County Republican Tommy Gregory brought his bill on Monday to the House Agriculture, Conservation and Resiliency Committee. He pitched it to the committee as a consumer protection bill to protect children from being attracted to hemp derived products.  The law last year prohibited the marketing that targets children and the packaging of such products that resemble candy that could be attractive to kids.

The new measure includes further moves in that direction – but also includes provisions to limit the amount of THC in hemp derived products by individual servings and packages – and would also ban synthetically or naturally occurring versions of controlled substances listed as delta-8 THC and Delta-10 THC.

The 2018 farm bill defined hemp as the cannabis plant with one key difference: hemp cannot contain more than 0.3 percent of THC. The most lucrative part of the hemp industry has involved the production of biomass that contains cannabidiol (CBD), a non-psychoactive compound believed to treat health conditions like anxiety, stress, anxiety and inflammation.

On Monday, there were more than a dozen people who work in the hemp industry who said that the bill if passed as written would devastate their businesses and imperil the entire hemp industry in the state.

But there were also several people who came before the committee to say that the hemp-derived products would either be eliminated or be reduced in terms of its potency.

Brandon Lee Eady suffered a C3 and C4 spinal cord injury from a car crash in 2011 that made him quadriplegic. He told the committee that after he was discharged from Tampa General Hospital after the incident, he was ingesting up to 40 prescription pills per day to deal with his physical pain, including oxycontin pain killers.

“Only through hemp and its derivatives such as delta-8, delta-9, CBD, its derivatives, and medicinal THC, I’ve been able to actually stand here before you today, prescription drug free,” he told the committee. “If you pass this bill…you will not only close thousands of businesses…but you will leave tens of thousands of people unemployed, but most importantly, you will leave hundreds of thousands of people like the ones that have come before you today, without proper means to deal with their respective pain, and they will have to resort to illegal or illicit methods to attain this.”

Republicans voted for the bill on Monday, but Democrats did not.

The Senate bill will go before its second and final scheduled committee meeting on Wednesday morning.


Source:, Mitch Perry

Weekly Mind Reader: A Look at Obsessive-Compulsive Behaviors Stemming From Epilepsy

Weekly Mind Reader: A Look at Obsessive-Compulsive Behaviors Stemming From Epilepsy

The Primary Care Companion just published a case study that examines obsessive-compulsive Phenomena as postictal behavioral change.


In simple terms, this report discusses a case of a 23-year-old man with epilepsy who experiences obsessive-compulsive behaviors (OCP) as part of his post-seizure phase. These behaviors include self-muttering, repetitive hand and face washing, low mood, anxiety, and restlessness. The patient has had epilepsy since the age of 3, and his seizures are followed by a postictal phase where he exhibits these obsessive-compulsive manifestations for 48 to 96 hours. Despite previous treatment, poor seizure control prompted a switch to carbamazepine, leading to one month of seizure freedom.

The report highlights that postictal behavioral changes, including obsessive-compulsive symptoms, can significantly impact the quality of life for epilepsy patients. The case is considered rare, as obsessive-compulsive behaviors in the postictal phase are not commonly reported.

The research also suggests the need for further research to understand the connection between these behaviors and seizure activity, not only in epilepsy patients but also in those with other psychiatric disorders.


Source:, Denis Storey

YOUR HEALTH: New tech targeting epilepsy

YOUR HEALTH: New tech targeting epilepsy

New technology is helping doctors pinpoint what’s causing the seizures better than ever before.

CLEVELAND, Ohio (Ivanhoe Newswire) – Almost 3.5 million people suffer from epilepsy—a disorder of the brain that can cause seizures. For some, these seizures can be controlled with medication, others will need brain surgery, which can be risky. But now, new technology is helping doctors pinpoint what’s causing the seizures better than ever before.

Gabriela “Gabi” Sable first started experiencing signs of epilepsy when she was just 11—not long after, seizures started.

“People’s parents actually went to the school and told the school that they didn’t want me to hang out with their kids,” said Sable.

Multiple hospitalizations and MRIs could not pinpoint what was causing the seizure.

“Some patients have very small malformations that we cannot see,” said Dr. Elia Pestan Knight, a pediatric epileptologist at the Cleveland Clinic Epilepsy Center.

Dr. Knight knew Sable’s lesion was in her frontal lobe, but it was too tiny to know exactly where.

“We can, simply, not remove the whole frontal lobe. Those are her dominant lobes for her language and for her ability to write and comprehend the spoken language,” explained Dr. Knight.

The most common MRI used for diagnosis is something called the 3 Tesla—that’s the size of the magnet. But now, there’s a more powerful 7 Tesla MRI, which was able to determine exactly where Sable’s lesion was.

“That lesion was far away from the areas of her speech,” added Dr. Knight.

Dr. Knight was able to perform a robotic laser ablation therapy to remove the lesion, and now, Sable is seizure-free and doing all the things she was never able to do before, including hiking Peru’s Machu Picchu.

Sable was part of a clinical trial on the 7 Tesla MRI. It has now been approved by the FDA and is expected to help hundreds of thousands of people suffering from hard-to-detect lesions that cause epilepsy.


Source:, Marsha LewisKirk Manson and Roque Correa


3.3 million children lose Medicaid coverage

3.3 million children lose Medicaid coverage

So far this year, there are at least 3.5 million fewer children on Medicaid rolls compared to last year.

Nina Serdiuk recalls the stressful moments when she found out her 14-year-old son Matvii had lost his Medicaid enrollment. With his medical condition, it is impossible for him to be without doctors and without insurance.

“Without any explanation they closed the straight access, and they didn’t give me new insurance,” Serdiuk said.

The mother moved to the United States from Ukraine six years ago, in part to help find medical treatment for her son.

“He has multiple issues, like neurological issues, he doesn’t speak, he doesn’t walk, he has a G-tube. He has epilepsy,” she said.

Like thousands of parents around the country, Serdiuk found out her child was dropped from Medicaid, the federal insurance programs that cover medical care for lower income families.

So far this year, there are at least 3.5 million fewer children on Medicaid rolls compared to last year.

These new enrollment decline figures come from an analysis by the Georgetown University Center for Children and Families that has been examining data from all 50 states.

Joan Alker, executive director of the Georgetown Center, says states are currently going through family requalification processes.

“The country is going through a major process in our Medicaid health care system, which does serve half of children in this country,” said Alker.

A federal policy that guaranteed medical coverage for low-income families through Medicaid during the COVID-19 pandemic ended back in March.

Since then, many states have been aggressively dropping recipients — including many children — from Medicaid rolls.

“A key question is how many of these 3.5 million are uninsured. We have a lot of reasons to be very worried that the answer is many of them are becoming uninsured,” said Alker.

These new enrollment decline figures come from an analysis by the Georgetown University Center for Children and Families that has been examining data from all 50 states.

Joan Alker, executive director of the Georgetown Center, says states are currently going through family requalification processes.

“The country is going through a major process in our Medicaid health care system, which does serve half of children in this country,” said Alker.

A federal policy that guaranteed medical coverage for low-income families through Medicaid during the COVID-19 pandemic ended back in March.

Since then, many states have been aggressively dropping recipients — including many children — from Medicaid rolls.

“A key question is how many of these 3.5 million are uninsured. We have a lot of reasons to be very worried that the answer is many of them are becoming uninsured,” said Alker., Axel Turcios

Functional Seizure Patients Face Surprisingly High Mortality

Functional Seizure Patients Face Surprisingly High Mortality

The death rate for patients with functional, nonepileptic seizures is higher than expected, with a rate comparable to epilepsy and severe mental illness, a Michigan Medicine-led study finds.

A team of researchers reviewed data from 700 patients who were diagnosed with functional seizures, also called psychogenic or nonepileptic seizures, between 2014 and mid-2023 and followed for a median of 15 months.

It is the largest study of its kind in the United States, matching international studies in Australia, Denmark, Sweden and the United Kingdom, all of which have nationalized health care systems.

Of the 700 patients with functional seizures, 11 of them died — a death rate almost 2.5 times the number of people who would be expected to die over the same period of time among similar people without functional seizures.

The results are published in Neurology: Clinical Practice.

“Functional seizures have long been stigmatized among health professionals, and our results highlight the serious nature of the diagnosis,” said senior author Nicholas J. Beimer, M.D., a clinical associate professor in the Departments of Neurology and Psychiatry at U-M Medical School.

“The results show that the stigma of this disease not being of relevance or seriousness to health professionals can be clearly dismissed, and of the need to improve access to care for this population.”

The death rate, researchers found, was comparable to patients with epilepsy and serious mental health conditions, including schizophrenia and depression.

Nearly all deaths of patients in the registry had a known cause related to comorbidities of functional seizures, such as stroke, neurodegenerative disease and cancer.

“All of the patients who died in our study had significant medical comorbidities and this should encourage us to care for patients with functional seizures from a holistic perspective, considering both their mental health and medical condition at the same time, rather than apart,” said co-author Elissa H. Patterson, Ph.D., clinical assistant professor of psychiatry at U-M Medical School.

Our health care system in the United States systematically separates mental and physical health into different silos, and it shouldn’t be this way, says co-author G. Scott Winder, M.D., M.Sc., a clinical associate professor of psychiatry at U-M Medical School.

The first death of studied patients occurred just over five months after they were referred for care. Researchers suggest that access to holistic, multidisciplinary treatment for functional neurological disorders must be improved, so that treatment can be initiated earlier for patients.

“Due to the limited number of health care centers with multidisciplinary clinics dedicated to evaluation and treatment of functional seizures, this research should motivate current clinics to increase capacity and meet these time-based goals, as well as to encourage other centers to establish new treatment clinics for this serious condition,” said Najda Robinson-Mayer, LMSW, a clinical social worker in the U-M Health who co-facilitates the Psychogenic Nonepileptic Seizure/Functional Seizure Teletherapy Group in the Department of Neurology.

“We recently created a virtual group therapy program for functional seizures so that patients can begin treatment within weeks of diagnosis, instead of months.”

Functional seizures are often misdiagnosed as epilepsy; many patients are treated for epilepsy for years before the receiving the correct diagnosis.

“Not only does early diagnosis and treatment have the potential to improve outcomes for people living with functional seizures, but it will also greatly reduce the likelihood they are treated with expensive antiseizure medications that will not work for their condition,” said first author Wesley T. Kerr, M.D., an assistant professor of neurology at University of Pittsburgh Medical Center who worked at U-M Health at the time the research was conducted.

“The goal is to get these patients the right treatment and soon as possible.”


Source:, Michigan Medicine – University of Michigan

Understanding epilepsy and its causes

Understanding epilepsy and its causes

EPILEPSY IS a disorder of the brain characterized by repeated seizures. A seizure is usually defined as a sudden alteration of behavior due to a temporary change in the electrical functioning of the brain.

Normally, the brain continuously generates tiny electrical impulses in an orderly pattern. These impulses travel along neurons, the network of nerve cells in the brain and throughout the whole body through chemical messengers called neurotransmitters.

In epilepsy, the brain’s electrical rhythms have a tendency to become imbalanced, resulting in recurrent seizures. In patients with seizures, the normal electrical pattern is disrupted by sudden and synchronized bursts of electrical energy that may briefly affect their consciousness, movements or sensations.

Epilepsy is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition, such as alcohol withdrawal or extremely low blood sugar.

Once diagnosed, treatment is vital for improving quality of life and preventing disability from repeated seizures. The good news is, advanced technologies and diverse treatment options, from medication to surgery and brain stimulation, allow patients to live fully and actively by reducing or stopping seizures.

State-of-the-art care involves highly customized strategies tailored to the specific seizure cause. Key technological advances include tiny electrodes and lasers, MRI imaging during surgery, and implantable devices that halt seizures, dramatically enhancing quality of life and participation in daily activities.

According to Dr Luis Tornes, director of epilepsy at Miami Neuroscience Institute, the most profound progress has been in understanding the nuances of an individual’s specific type of epilepsy. By accurately identifying both the origin of seizures and their underlying cause, he said, they are better equipped to develop highly personalized treatment plans for patients.

“This precision allows for a broader range of therapeutic interventions, including more effective medications and surgical options, when appropriate,” Dr Tornes said.

Advancements in imaging technology, he said, are enabling healthcare professionals to identify the origins of seizures with unparalleled accuracy. “Of particular note is stereo electroencephalography (SEEG), a minimally invasive surgical procedure used to identify deep areas in the brain where difficult-to-treat epileptic seizures begin,” Dr Tornes said.

“SEEG electrodes can be implanted to gather data directly from specific brain regions, providing valuable insights that were previously difficult to obtain. This more comprehensive approach to diagnosis results in more targeted interventions, increasing the likelihood of successful treatment outcomes,” he added.

About half of the people who have one seizure without a clear cause will have another one, usually within six months. A person is twice as likely to have another seizure if there is a known brain injury or other type of brain abnormality.

If the patients does have two seizures, there is about an 80 per cent chance of having more. If the first seizure occurred at the time of an injury or infection in the brain, it is more likely the patient will develop epilepsy than if the seizure did not happen at the time of injury or infection.

According to the Epilepsy Foundation, epilepsy affects three million people in the United States and 50 million worldwide. Epileptic seizures may be tied to brain injury or genetics, but for 70 per cent of epilepsy patients, the cause is unknown. The Epilepsy Therapy Project notes that 10 per cent of people will have seizures in their lifetime.

In addition, epilepsy impacts over six million people in Latin America and the Caribbean, exceeding cases of Parkinson’s, multiple sclerosis, cerebral palsy, and autism combined.

Epilepsy affects more than 300,000 children under the age of 15, and more than 90,000 young people in this group have seizures that cannot be adequately treated. The onset rate starts to increase when individuals age, particularly as they develop strokes, brain tumors or Alzheimer’s disease, all of which may cause epilepsy. Reports indicate that more than 570,000 adults over the age of 65 suffer from the disorder.

More men than women have epilepsy. Children and adolescents are more likely to have epilepsy of unknown or genetic origin. Brain injury or infection can cause epilepsy at any age. The Epilepsy Foundation also reports that 70 per cent of children and adults with newly diagnosed epilepsy can be expected to enter remission after having gone five years or more without a seizure while on medication.

In addition, 75 per cent of people who are seizure-free on medication can be weaned from medication eventually. According to the National Institute of Neurological Disorders and Stroke, 20 per cent of epilepsy patients have intractable seizures, seizures that do not respond to treatment.

Choosing the right treatment, Dr Tornes said, is a detailed process that involves a series of advanced tests. Patients usually undergo prolonged video EEG monitoring, which records brain activity to understand the origin and location of the seizures.

“Various types of brain scans, like MRI, PET scans and functional MRIs are also used to get a clearer picture of what’s going on inside the brain. Neuropsychology tests assess how the brain’s condition is affecting mental skills. While these are the standard tests, additional ones may be carried out if needed. Once all the necessary information is gathered, doctors can then determine which treatment option will be most effective,” Dr Tornes said.

The following factors may increase the risk of seizures in people predisposed to seizures:

• Stress

• Sleep deprivation or fatigue

• Insufficient food intake

• Alcohol use or drug abuse

• Failure to take prescribed anticonvulsant medications.


Source:, American Association of Neurological Surgeons, Keisha Hill

Finding the right medication depends on the type of epilepsy you have. Not all medicines work on all seizures; the wrong kind could make seizures worse.

Finding the right medication depends on the type of epilepsy you have. Not all medicines work on all seizures; the wrong kind could make seizures worse.

Choosing the right epilepsy medication can have a big effect on the frequency of your seizures and your quality of life.

First, finding the right medication depends on what type of epilepsy you have, partial seizures (also called focal seizures) or generalized seizures. All medications don’t work on all types of seizures, and the wrong medication potentially can make seizures worse.

The Food and Drug Administration has approved more than 30 anti-seizure medications, and each has its own advantages and disadvantages.

For example, some anti-seizure medications also can help with migraine or depression, while others may make depression worse. They can cause weight gain or weight loss, require periodic blood tests or may be more likely to interact poorly with another medication you are taking.

“Because anti-epilepsy drugs need to be taken for life, it’s important to find a drug that does the most to eliminate seizures with the fewest possible side effects,” said Lauren P. Mosier, DNP, APRN, with Norton Neuroscience Institute.

Norton Neuroscience Institute Comprehensive Epilepsy Center

Common side effects are fatigue, an upset stomach, dizziness and blurred vision. Many drugs also have rarer, serious side effects such as liver failure, drug reaction rash, or causing suicidal thoughts and behavior.

Anti-seizure medications also can cause issues with attention, memory and concentration.

It’s important to remember side effects vary from person to person. Just because a drug has a potential side effect does not mean you will experience it.

An epilepsy specialist can help you find a medication tailored for your individual needs. The specialist also can help with dosing, especially if you are just starting on an anti-seizure medication.

Starting at a low dose and gradually increasing the dosage often causes many of the side effects to go away over several weeks or months. Even so, the vast majority of people on an epilepsy medication will still experience at least one side effect.

Ideally, a single drug can control your seizures and leave you with tolerable side effects. For 6 in 10 people, the initial anti-seizure medication makes them seizure free.

It’s generally recommended if one anti-epilepsy drug doesn’t work, then a second should be tried individually, when possible — picking a medication that works differently on the brain and body.

You may find your anti-seizure medication works well initially, but the effectiveness wears off over time. With the end of this so-called honeymoon effect, you may need a higher dose, which could in turn worsen the side effects.

An epilepsy specialist can help you weigh the pros and cons of continuing with one medication versus trying another.

Taking a single drug is called monotherapy. Taking two or more anti-seizure drugs is called polytherapy. If your provider recommends polytherapy, it is important that you follow up regularly for monitoring.

If you fail on two or more anti-seizure medications, you can try polytherapy or surgery to combat your seizures.

Norton Neuroscience Institute Comprehensive Epilepsy Center is nationally recognized as a level 4 center by the National Association of Epilepsy Centers, meaning patients receive the highest level of medical and surgical evaluation and treatment.


Source:, David Steen Martin, Lauren P. Mosier DNP, APRN

Innovative complex care approaches to manage advanced cases of epilepsy

Innovative complex care approaches to manage advanced cases of epilepsy

Approximately two-thirds of individuals with epilepsy can achieve seizure control by choosing the appropriate medication tailored to their specific needs.

Epilepsy is a chronic neurological disorder characterized by recurrent seizures, which result from excessive electrical discharges in the brain. These seizures can vary in severity and frequency, leading to physical problems, psychological conditions, and an increased risk of premature death.

However, despite the condition being challenging to live with, there is hope on the horizon, thanks to the expertise of healthcare teams offering comprehensive care and treatment options, that go beyond medication.

Guidelines for prescribing anti-seizure medications rely on a comprehensive assessment of diagnostic findings. Once an accurate diagnosis has been established, doctors tailor treatments accordingly.

Approximately two-thirds of individuals with epilepsy can achieve seizure control by choosing the appropriate medication tailored to their specific needs. Nevertheless, not all patients exhibit a positive response to medication, and up to one-third of them experience persistent seizures. These individuals, termed as patients with drug-resistant epilepsy, require further, specialized evaluations and might be eligible for interventions like brain surgery or neurostimulation therapy.

Surgical interventions and neurostimulation

Dr. Florian Roser, Chair of Neurological Institute from Cleveland Clinic Abu Dhabi, explains: “While medication remains a cornerstone, there are cases where surgical intervention becomes necessary. One such surgical approach is focal resective surgery, which is employed when seizures originate from a distinct brain focus, typically in the temporal lobe. This procedure involves the careful removal of the problematic brain area while preserving vital neurological functions. It’s a precise and intricate operation that can significantly improve a patient’s quality of life. Common causes of partial epilepsy that may warrant this surgery include the presence of scars, tumors, or developmental issues.”

Dr. Roser explains that for more extensive epileptic regions that cannot be managed through focal resective surgery, a lobectomy may be considered. This decision is made after a meticulous risk-benefit evaluation. He notes, “A lobectomy entails the removal of a portion of the brain, disconnecting the epileptic hemisphere from the healthy one, thus preventing seizure spread. This procedure is particularly beneficial for patients with severe and intractable epilepsy, offering the hope of a life with fewer or no seizures.”

In some specialized cases, such as those with disorders like Sturge-Weber disease or hemimegalencephaly, which affects one hemisphere of the brain, hemispherectomy may be recommended. This involves partial or complete removal of the affected hemisphere, effectively isolating the epileptic activity from the healthy part of the brain. “While it is a complex procedure, it can be life-changing for individuals suffering from these conditions,” Dr. Roser observes.

Another innovative approach to treating epilepsy is vagus nerve stimulation (VNS). VNS is employed when traditional therapies prove ineffective in managing seizures or depression. This medical procedure involves the use of electrical impulses to stimulate the left vagus nerve, a crucial component of the parasympathetic nervous system responsible for regulating various bodily functions, including digestion, heart rate, and mood. VNS sends regular, mild pulses of electrical energy to the brain via the vagus nerve, through a device that is similar to a pacemaker.

Dr. Roser explains that during the VNS procedure, a small device is implanted beneath the skin in the chest, and it is connected to the left vagus nerve via a wire. This device sends painless electrical signals to the brain, helping to mitigate irregular brain activity associated with epilepsy.

While the exact mechanism remains under scientific investigation, VNS has demonstrated remarkable success, reducing seizures in approximately 40 per cent to 50 per cent of patients who undergo this treatment.

Deep brain stimulation (DBS) is another neurostimulation method that employs electrodes deep within the brain. Electrical impulses are sent through these electrodes from a pulse generator implanted near the collarbone. These impulses can also help reduce abnormal signals that underly seizures.

A diagnostic method that also involves the use of electrodes is Stereo-EEG (SEEG). Electrodes are also implanted in the brain to accurately record abnormal signals that cause seizures. They pinpoint the precise source of epileptic seizures in the brain, helping the surgeon decide if a surgical intervention would be beneficial and plan for it accordingly.

Epilepsy is a complex condition that requires comprehensive care, advanced technology, and a world-class healthcare team. The Epilepsy Program at Cleveland Clinic Abu Dhabi exemplifies these principles, offering hope and healing to individuals living with epilepsy. Through innovative treatments and a multidisciplinary approach, this program is making strides in improving the quality of life for epilepsy patients.


Source:, Omnia Health Staff

Seizures May Not Always Show Severe Symptoms! Note These Subtle But Common Signs

Seizures May Not Always Show Severe Symptoms! Note These Subtle But Common Signs

These signs may seem ordinary or people might fail to notice the abnormality or severity in them.

Seizures have some classic symptoms that we may be aware of. Most of these symptoms are categorized as severe because of its intensity and nature. Here are some of the most commonly experienced symptoms: shaking, falling to the ground suddenly, convulsions and foaming at the mouth. These symptoms are very easily noticeable and the cause can also be easily determined.

However, seizures also have other signs that are more subtle. According to a national survey conducted by Orlando Health, many people especially Americans are not aware of the subtle signs for instance: blinking rapidly, numbness, tingling feeling, crying out or screaming, laughing suddenly are also signs of a seizure. Experts state that convulsive seizure is a severe symptoms but it is very rare. It will be more useful for people to also be aware of the subtle signs.

What Is Focal Seizure?

The most common type of seizure experienced by people is the focal seizure. It happens when their is abnormal firing of electricity in one part of the brain. It mostly happens to adults with epilepsy. This is the type of epilepsy which is the most difficult to identify according to experts. The signs and symptoms of it may be very subtle which is why diagnosing or identifying it gets difficult. Some people may show signs in the middle of a conversation by suddenly stopping their response, they might make abnormal movements with their mouth or hands. It might look like they are chewing something in their mouth. Blinking and unresponsive staring are other two signs of focal seizure.

Subtle Signs Of Seizure

These signs may seem ordinary or people might fail to notice the abnormality or severity in them. Here are some lesser known symptoms that some people face:

  1. Gelastic seizures or unprovoked laughter
  2. Dacrystuc seizures or crying sounds.
  3. Pouting.
  4. Atypical posturing meaning weirdly raising your arm like a fencer.
  5. Bicycle-like movements of legs at night time.
  6. Head drop seizures. A person might suddenly lose muscle support in the neck and head resulting in a sudden drop of the head. This symptom is followed by the patients arm raised upward.
  7. Facial twitching in one particular side.
  8. One very rare and exceptional symptom is when the heart stops beating.


Source:, Kinkini Gupta

Can the Keto Diet Treat My Epilepsy?

Can the Keto Diet Treat My Epilepsy?

Eating keto is more than a fad diet for people with epilepsy. It offers a way to minimize or control seizures.

In fact, studies show that the ketogenic diet – high-fat, low carb – reduces seizure frequency by about 50% in about half the patients on it, similar in effect to adding antiseizure medication.

But why does the keto diet help with epilepsy? Lisa Knopf, MD, a specialist with the Hartford HealthCare Ayer Neuroscience Institute Epilepsy Center, explains.

The reason why it’s effective isn’t entirely clear.

The secret to the keto diet’s effectiveness is in the body’s reaction to low-carbohydrate eating, says Dr. Knopf.

“A ketogenic diet – high-fat, low-carbohydrate – shifts the body into ketosis, where it burns fat for energy instead of carbohydrates… But, we still don’t understand the exact mechanism for why it works,” she explains.

But there are theories.

Common theories for why this is so include:

  • Ketone bodies. Keto encourages the body to produce ketone bodies from fatty substances in the liver. These calm the brain and reduce the chance of seizures.
  • Stabilizing brain activity. Ketone bodies may help balance brain chemicals, making it less likely unusual electrical activity will cause seizures.
  • Changing energy source. When the body uses ketones instead of glucose from carbohydrates for energy, the brain may be less prone to overactivity.
  • Reduced inflammation. Some studies suggest the diet has anti-inflammatory effects. Inflammation, Dr. Knopf says, can be linked to seizures
  •  Adjusting brain metabolism. The diet changes how the brain uses energy, which might affect nerve cell function and decrease the chance of seizures.

The keto diet can be tough, but these alternatives can help.

Keto, Dr. Knopf says, is strict and can be challenging to follow, especially for people with busy lives.

“The classic ketogenic diet follows a 4:1 ration with 4 grams of fat for every 1 gram of protein/carbohydrate. That translates into getting up to 90% of your daily calories from fat! People can struggle to stick to this,” she says.

Pre-made keto shakes eliminate the weighing and measuring required by keto meal prep and there may be fluid and calorie restrictions.

A number of helpful alternatives to the classic keto diet have also been developed:

  • Modified Atkins Diet. The 1:1 ratio (1 gram of fat for every gram of protein and carbohydrate) means 65% of calories come from fat, 25% from protein, and 10% from carbohydrates. There are no restrictions on fluid, calories or protein.
  • Low-Glycemic Index Treatment. This allows for more carbs, emphasizing complex carbs less likely to spikes blood sugar levels. While people tolerate this approach better, it does produce a lower level of ketosis, Dr. Knopf says.

Can the keto diet help my epilepsy?

“I recommend the ketogenic diet for certain patients with drug-resistant epilepsy or severe forms of epilepsy that start in childhood and include daily seizures,” Dr. Knopf notes. “It is never a replacement for antiseizure medications, although in some cases doses can be reduced.”

But before you make any dietary changes, be sure to speak with your doctor.

“People with epilepsy should only implement these dietary changes under the supervision of a neurologist and dietician. We sometimes even initiate it in the hospital to monitor labs and get patients into ketosis faster,” she says.


Source:, Susan McDonald

Syncope and seizure both can cause a loss of consciousness, but there are important differences.

Syncope and seizure both can cause a loss of consciousness, but there are important differences.

Syncope and seizure both can cause a loss of consciousness, but there are important differences.

Syncope — commonly referred to as passing out or fainting — often results from a drop in blood pressure.

Seizures, on the other hand, are caused by abnormal brain activity. The reason behind the abnormal activity may be epilepsy, stroke, cancer or an infection in the brain.

People who pass out as a result of syncope generally recover on their own, and there may be no lasting symptoms. Seizures tend to last longer and often are followed by confusion and extreme fatigue.

“If you lose consciousness, you should talk to your health care provider. Both seizures and syncope can have serious causes and should be checked out,” said Ambica M. Tumkur, M.D., neurologist, Norton Neuroscience Institute.

The difference between syncope and seizure often can be detected by looking at brain waves using an electroencephalogram (EEG). What happened just before the loss of consciousness also can offer clues about the cause.

Care everywhere you are

Get care online, at your primary care provider’s office, at a Norton Immediate Care Center or through a Norton Prompt Care Clinic.

To function properly, your brain needs blood pumping from the heart as well as controlled electrical signals. When a seizure or syncope occurs, one of these processes is not working the way it should.

About half of syncope cases are caused by a drop in blood pressure. Fainting like this can be caused by stress, such as exposure to injury or blood, fatigue, standing for too long, or being in a hot or crowded place. The loss of consciousness often is preceded by lightheadedness, nausea, feeling warm or cold, sweating, weakness, dizziness, blurred vision or changes in hearing. Syncope also can have more serious causes. These include an irregular heartbeat or issues with blood flow to the brain.

You should call 911 if the person is not breathing, does not wake up after one minute, has difficulty moving or speaking after waking up, has chest pains or heart palpitations, is injured or fainted while exercising or lying down.

Unlike syncope, seizures happen not from a drop in blood pressure, but because of uncontrolled activity in the brain. The underlying cause can be epilepsy, infection, brain injury, fever, stroke, withdrawal from some drugs, electrolyte imbalances, low blood sugar or sleep deprivation.

Seizures do not always result in a loss of consciousness. They may cause someone to make a noise or cry out when the seizure begins, to bite their tongue or suddenly urinate. Some people report a strange feeling just before the seizure begins, which is sometimes referred to as an “aura.” Seizures can cause convulsions, which usually begins with muscles stiffening and then enters a phase of uncontrolled rhythmic movement. Someone who has a seizure usually has no memory of the experience.

With epilepsy, seizures happen more than once and occur spontaneously, without any apparent cause.

If you see someone having a seizure, get them to the floor if they are not already lying down.  Move hard or sharp objects away from them. Do not try to restrain them and don’t put anything in the person’s mouth.

You should call 911 if it is a person’s first seizure, if the seizure lasts for more than five minutes, seizures happen one after another, the person appears to be choking or having difficulty breathing, the person is injured or the seizure happens in water.


Source:, David Martin, Mabica M. Tumkur M.D.

Daniel Freedman: Advancing Care for a Widely Misunderstood Condition

Daniel Freedman: Advancing Care for a Widely Misunderstood Condition

Daniel Freedman, D.O., knows that not everything is what it seems — especially when it comes to seizures. Psychogenic nonepileptic events look like epileptic seizures but are not, making them highly misunderstood by patients, families and physicians alike.  

Freedman, a child neurologist and assistant professor of neurology at Dell Medical School, co-developed the Psychogenic Nonepileptic Events Clinic, the only clinic of its kind in Texas and one of the few in the U.S. There, he and partners, including Lindsey Elliott, Ph.D., are working to improve health communication for families facing the diagnosis — as well as mitigating the social stigma surrounding the condition.

“These episodes are not fake; patients with the condition are suffering and need our help.”

How would you explain psychogenic nonepileptic events to someone who is not aware of the condition?

Unlike epileptic seizures, psychogenic nonepileptic events are not triggered by electrical abnormalities in the brain, making it one of the most misunderstood neurological disorders, as patients are often accused of faking their symptoms. However, the symptoms are tangible and frightening for patients and their caregivers. Research has shown that patients can improve with symptom-specific therapy, which is offered in the Psychogenic Nonepileptic Events Clinic.

Not comprehending something does not mean it is false. These episodes are not fake; patients with the condition are suffering and need our help. There are effective treatments for psychogenic nonepileptic events, but many patients may never be able to receive treatment if they feel dismissed by the health care system, hence the need to decrease stigma and raise awareness.

What experience helped you gain insight into the need for additional research surrounding this condition?

I was a third-year resident on call, new to neurology, when I was paged by a distressed parent whose child had just been discharged from the hospital for psychogenic nonepileptic events. Unfortunately, the events were now worse. The father was upset at having been told everything was fine with his daughter, despite that not being the case. I met with the father and his daughter in the emergency department, where I discussed the child’s diagnosis. The discharging team had told him things would get better since his child’s scans seemed normal, but his daughter hadn’t been given a formal diagnosis, and he wanted to know what was happening to her.

I explained the limitations of medical tests for a disorder like this: Normal scans do not equate with normal health. After talking about the interaction of the mind, brain, and body, and how all three components are interrelated, I walked him through the basic principles of treatment and the expected prognosis. When our conversation concluded, he shook my hand as he thanked me for my time and explanation.

How will your research help improve the experiences of those experiencing these events?

Although psychogenic nonepileptic events have been described throughout time, we are only just diving into this disorder. One of the biggest challenges in explaining this diagnosis is that we do not — yet — know what causes psychogenic nonepileptic events; however, we have some understanding of risk factors. For example, having epilepsy is one of the biggest risk factors for developing psychogenic nonepileptic events. Neuroscience data also supports the idea that psychogenic nonepileptic events is caused by a loss of agency over the body. We have limited data on how best to communicate this diagnosis, which is one of the key areas we are investigating.

As I learned from my interaction with the parent of a child experiencing psychogenic nonepileptic events, the difference between good and bad communication regarding this diagnosis has the power to change the clinical course for patients — resulting in fewer emergency department visits, decreased distress for patients and caregivers, and fewer absences from work or school.



Super cat called Maggie can detect epileptic seizures eight hours before they happen

Super cat called Maggie can detect epileptic seizures eight hours before they happen

Molly paid £300 for pedigree Maggie, a four-month-old Persian kitten and within weeks Molly – who can’t work due to her condition – noticed that Maggie’s behavior would change before a seizure

A woman with epilepsy says her cat can detect her seizures eight hours before they occur.

Molly Brooke, 30, can experience up to nine epilepsy attacks a week, leaving her body stiff and an “uncontrollable tingling” in her arms and legs.

After being diagnosed with the condition aged eight, Molly has struggled to manage her condition – until her feline friend came along.

In September 2023, Molly paid £300 for pedigree Maggie, a four-month-old Persian kitten.

Within weeks, Molly, who can’t work due to her condition, noticed that Maggie’s behaviour would change just before a seizure.

Molly, who lives in assisted living, in Birmingham, said: “I got her as a companion but she’s turned out to be so much more.

“Within the first week of having her, I noticed she’d go into manic mode and become playful by running around working all her energy.

“Then she calmed down completely and went into monitor mode, not leaving my side. If I got up to leave the room to get a cup of tea, she’d follow me.

“When this kept happening, it clicked that she was looking out for me because cats can sense chemical changes in our bodies.

“During my seizures, she’ll lie on my arm and encourage me to stroke her – like she’s trying to distract me. This is all her choice, she’s just acting on instinct.

‘’It’s so touching that she is looking out for me.”

After an early diagnosis, as a young woman, Molly struggled with socializing and going out alone due to the severity of her symptoms.

After arranging for Maggie to be delivered to her, she started picking up on her owner’s condition ‘’almost immediately’’.

“Cats have around 30 receptors in their nose which means Maggie can pick up on chemical changes in my body,’’ Molly said.

“This enables her to alert me in her special way. Sometimes she’s way ahead of me and knows up to eight hours before my seizure.

“When they happen – which is usually in my sleep – she’ll put her head up to mine. Her affection helps take my mind off what’s happening to me and is very calming.

“But being near or sitting in my lap when having a seizure, she helps stabilise my movement. She’s the best cat I could’ve hoped for and my very best friend.”


Source:, Holly Meu-Yu Stafford


Seizures could be the cause of many sudden unexplained deaths in toddlers

Seizures could be the cause of many sudden unexplained deaths in toddlers

According to a study published in Neurology, many unexplained, sleep-related deaths among toddlers could be because of seizures, after audio-visual recordings implied that deaths were related to convulsive seizures.

Study investigators sought to understand the potential mechanisms of death by reviewing videos of sudden deaths in toddlers, as more than 2900 children aged younger than 4 years die from unknown causes on an annual basis.

This accounts for more than 219,000 life years lost annually and most deaths are sleep-related and “unwitnessed with unremarkable autopsies” that limit understanding of death mechanisms.

Limited research is available for sudden unexplained deaths in childhood (SUDCs) for those aged 1 to 18 years, with less than 1% of research publications compared with sudden infant deaths.

The study authors note that sudden unexpected death in epilepsy (SUDEP) risk factors align with sudden deaths in children. Nearly all SUDEP cases recorded on video follow a tonic-clonic seizure “with an early postictal, centrally mediated depression or cessation of respiration followed by cardiac arrest.”

The investigators analyzed terminal videos in a consecutive series of sleep-related child deaths from the SUDC Registry and Research Collaborative (SUDCRRC) to document observations and explore mechanisms of death.

Medicolegal death investigation professionals, parents, or clinicians in the United States, United Kingdom, Canada, Germany, and Australia referred cases. The registry enrolled 301 SUDC cases with complete data collection including forensic pathology biospecimens and death scene, police investigation, autopsy, and toxicology reports.

The study investigators reviewed the first 8 consecutively enrolled cases with video featuring the child’s last sleep period, which were similar to the other 293 (no video recordings) cases regarding clinical history, postmortem findings, and demographics.

One video was excluded because of poor visibility of the child. The remaining 7 videos included 3 girls and 4 boys aged 13 to 27 months. Cases 1 to 5 were in a crib, case 6 was in a converted crib with the side rail removed, and the final case was in a portable crib.

All children had normal developmental milestones and 4 had common pediatric conditions of preterm birth with recent otitis media, chronic otitis media and bilateral myringotomies, egg allergy, and febrile seizures.

Six forensic pathologists, a pediatric epileptologist, and a sleep medicine/epileptologist physician independently reviewed each video. The majority consensus for the 6 forensic pathology reviewers were combined into 1 rater opinion. Percentage agreement was then assessed across 3 raters (1 combined forensic pathology opinion, 1 pediatric epileptologist, and 1 epileptologist/sleep medicine physician).

Of the 7 videos, 5 were continuously recorded and 2 were triggered by motion or sound. Two videos did not feature audio. Each continuous recording included a terminal convulsive event that lasted between 8 and 50 seconds.

After the convulsion, 4 children survived for more than 2.5 minutes. All children had normal cardiac pathology and no known cardiac disease variants were identified using whole-exome sequencing.

Across the 7 videos, the 6 forensic pathologists had a moderate agreement in evaluating convulsive activity. The final 3 raters had 100% agreement on cases 1 to 4, 67% agreement for case 7, and 33% agreement for cases 5 and 6 for the presence of convulsive events.

Abnormal movements were present in 6 videos, and in all 5 continuously recorded videos, “a convulsive event was identified shortly before death… The 2 motion-triggered videos had time gaps: [1] had indeterminant movement and the other had abnormal movements suggesting a convulsive event,” the results stated.

Six children were prone and face down, and 1 had autopsy evidence of airway obstruction.

Overall, a convulsion preceded death in 6 cases. The study authors noted that without video evidence, seizures would not have been implicated in death investigations and that seizure-related deaths are underrecognized in patients with epilepsy and in those without.

Investigators concluded that, “terminal seizures may play a role in many unwitnessed sleep-related deaths in toddlers and potentially in infants, older children, and adults.”


Source:, Joshua Fitch

Epilepsy Among Military Veterans: Does Deployment History Impact Risk?

Epilepsy Among Military Veterans: Does Deployment History Impact Risk?

Deployment history affected whether military veterans would develop epilepsy, with penetrating TBI having the greatest impact.

Among military veterans, deployment history is a significant predictor for epilepsy, with penetrating traumatic brain injury (TBI) having the greatest impact potentially due to combat/blast. These are the findings of a study published in Neurology.

It is well-established that TBI is a risk factor for epilepsy. A fifth of post-9/11 era veterans have been diagnosed with TBI, however, combat-related TBI and noncombat TBI may have differing relationships with epilepsy.

To assess the effect deployment history has on epilepsy risk, researchers sourced data for this study from the Veterans Health Administration (VHA) and Defense Health Agency (DHA). Veterans (N=938,890) who received care for 2 or more years from both the VHA and DHA were assessed for epilepsy on the basis of deployment history. Epilepsy was defined by medical coding for antiseizure medication and disability services related with epilepsy.

The study population comprised individuals who were deployed (n=663,272) and not deployed (n=275,618). The study participants were mean age 34.66 and 13.57% to 31.88% were women. The likelihood of having a TBI was more likely among deployed veterans compared with nondeployed veterans (33.94% vs 4.24%), respectively.

[D]eployment and deployment related risk factors are other important considerations in assessing epilepsy risk among veterans.

Among the deployed and nondeployed groups, 2.54% and 3.85% had epilepsy, respectively. The prevalence of epilepsy increased with TBI severity, with the highest prevalence occurring among veterans with a penetrating TBI (26.33%).

Other neurologic conditions, such as Alzheimer disease (AD) or frontotemporal dementia, stroke, multiple sclerosis (MS), Parkinson disease (PS), anoxic brain damage, and encephalopathy were more common among the nondeployed group. Among the deployed group, serious mental illness, such as major depression, bipolar disorder, and schizophrenia, were more common.

A total of 27 comorbidities had significant interactions with deployment history and epilepsy in the unadjusted analyses.


Source:, Jessica Nye, PhD

Study: Better, safer treatments are needed for Dravet syndrome

Study: Better, safer treatments are needed for Dravet syndrome

Researchers surveyed 227 physicians who reported data on 617 patients

Available treatments aren’t enough to fully control seizures for most people with Dravet syndrome, and most have side effects that can worsen their quality of life.

That’s according to a new study funded by Takeda. A team led by scientists at the company presented the work at the American Epilepsy Society (AES) Meeting in the poster “Real-world treatment patterns and outcomes among patients with Dravet syndrome.”

“There is a need for new treatment options with a balanced benefit-risk profile that can be combined with current [anti-seizure medications] with low or no drug–drug interactions,” the scientists wrote. Takeda is developing an experimental Dravet therapy called soticlestat.

Seizures are a hallmark symptom of Dravet syndrome and controlling them is a major goal of treatment. Three medications — Diacomit (stiripentol), Epidiolex (cannabidiol), and Fintepla (fenfluramine) — are specifically approved to manage Dravet-related seizures and a range of other anti-seizure medicines also may be used separately or in combination.

Seizures, side effects

Scientists here surveyed doctors caring for patients with Dravet syndrome to better understand treatment patterns and the burden of treatments for people with the disease.

A total of 227 physicians participated, reporting data on 617 Dravet patients, most of whom were from Europe. Some were from the U.S., China, and Japan.

The most common medication was valproate, an anti-seizure medicine sold as Depacon, which was being used by slightly more than half the patients. Diacomit and clobazam (sold as Onfi) also were commonly used.

Around two-thirds of the patients received more than one treatment regimen over time. In most cases, one or more treatments was added and/or a treatment was switched for another. The most common reason for stopping a treatment was that it wasn’t sufficiently controlling seizures.

For the three most common types of seizures (myoclonic, tonic, and generalized tonic-clonic), only about a third (28-34%) of patients reported their seizures were well controlled.

Most (71%) reported at least sometimes needing an additional “rescue” medication to manage seizures on demand. The most commonly used rescue medicine was diazepam (sold as Diastat).

Slightly more than half (55%) the patients reported at least one side effect related to their current regimen. The most common side effects included sleepiness, fatigue, problems with attentiveness, and reduced appetite.

Most of the patients who had side effects (81%) reported they impacted their quality of life at least a little, with 22% reporting a moderate impact and 3% a significant impact.

Across all the outcomes, results for the subset of patients who were taking at least one of the three medicines specifically authorized for Dravet syndrome were generally comparable to findings in the overall study population.

“Patients with [Dravet syndrome] have a large treatment burden characterized by a high rate of [side effects] that impact [quality of life], high frequency of rescue medication use, and low rates of well-controlled seizures,” said the scientists who noted their findings are limited because they’re based on a survey of physicians. They said the data suggest more effective medicines with a manageable safety profile are needed to help manage Dravet syndrome.


Source:, Marisa Wexler

Functional hemispherectomy stops seizures cold in kids with drug-resistant epilepsy

Functional hemispherectomy stops seizures cold in kids with drug-resistant epilepsy

Joseph Riofski had his first seizure at age 4 ½.

Thus began a medical journey that led to admissions to two adult hospitals and three children’s hospitals, countless brain imaging and neurological tests, multiple intravenous immunoglobulin treatments, and trials of eight anti-seizure medications over the ensuing four years.

By the time Joseph was in second grade, he was having up to six seizures per day. He had to transfer to an elementary school where an assigned nurse stayed at his side to assist when he had a seizure during classes.

But mostly Joseph slept through his classes, the result of taking high doses of multiple anti-seizure medications. “Joseph was sleeping 18 hours per day, he wasn’t walking correctly, and he was stuttering,” said his mother, Sara Riofski. “Just walking from one room to another in our house could bring on a seizure, so I had to carry him everywhere and he was in a wheelchair at school.”

Despite numerous hospitalizations, neurologists couldn’t give the family a definitive diagnosis — until Joseph was admitted to Comer Children’s Hospital.

“We suspected that Joseph had Rasmussen’s encephalitis,” said Douglas Nordli, Jr., MD, Chief of the Section of Pediatric Neurology and Co-Director of UChicago Medicine’s Comprehensive Epilepsy Center.

Rasmussen’s encephalitis is a rare and disabling condition involving inflammation in one hemisphere of the brain. Believed to be autoimmune in nature, the disorder causes intractable seizures, profound weakness on the opposite side of the body, and neuropsychological issues such as deficits in working memory and brain processing speed.

Theodore Rasmussen, a neurosurgeon at the University of Chicago, first described the disorder in 1958. As a level 4 epilepsy center, UChicago Medicine epileptologists see pediatric patients with Rasmussen’s encephalitis fairly regularly. The disorder has an annual incidence of only 2.4 cases per 10 million children, said Nordli.

Anti-seizure medications may initially control the seizures, and some patients receive immune modulatory treatments to help arrest disease progression. But inevitably, the seizures become intractable, making a functional hemispherectomy the best option to arrest the seizures and restore patients’ quality of life.

“Through a series of cuts in the brain, we disconnect the diseased hemisphere from the contralateral hemisphere as well as all the diseased lobes from each other,” said Eric Thompson, MD, Director of Pediatric Neurosurgery at Comer. The surgery functionally isolates the hemisphere impacted by severe epilepsy. This eliminates the need to remove large amounts of brain tissue, which can lead to a higher degree of complications, Thompson explained.

For children with Rasmussen’s, early surgery offers the best chance of preserving brain function and reducing damage to the contralateral hemisphere from the abnormal electrical activity generated in the diseased hemisphere, said Nordli.

“The younger the child, the greater the plasticity in the brain, which allows some functions, such as language, to move to the contralateral hemisphere,” he said.

Other brain functions — such as peripheral vision and fine finger movements — are fixed, so a hemispherectomy won’t improve deficits in those areas.

But cognition generally improves after surgery. “Patients typically do better cognitively because they’re not having seizures throughout the day, enabling them to attend school and to learn,” said Thompson.

Nordli recalled a patient whose IQ rose to 100, a normal intellect, from 80 before hemispherectomy. “The surgery freed her brain to function the way it was supposed to,” he said.

Despite the promise that their child will be seizure-free after hemispherectomy, parents often struggle with the decision to proceed with surgery when their child has residual neurologic function remaining in the diseased hemisphere. “It’s human nature to try to preserve every aspect of brain function in your child,” said Nordli.

Joseph’s parents were no exception. “We knew that hemispherectomy was the only way to help Joey, but it was so hard to convince ourselves that we were making the right decision because there was no going back and reattaching his brain if it didn’t work,” said Sara. “In the end, we wanted his seizures to end and for him to be a kid again.”

In July, Thompson performed a hemispherectomy on Joseph, a six-hour surgery. Today, 8-year-old Joseph is making remarkable strides, said his mother. Before surgery, Joseph was unable to participate in gym class or sports and frustrated that he was different than other kids. Today he exuberantly runs with his classmates on the playground, is seizure-free, and has discovered that he loves basketball.

Taking multiple anti-seizure medications had robbed Joseph of curiosity and interest in the world. “Now he asks constant questions, he understands and remembers the answers,” said Sara. “And he is smiling and laughing again. We owe Dr. Thompson the world because he gave us our son back. Joseph can now be a kid again.”

It requires a coordinated effort from a dedicated team of people, along with the right tools and expertise, to provide the state-of-the-art care worthy of a level 4 epilepsy center.

Four months after surgery, Joseph has limited functional movement in his left hand along with weakness on the left side of his body. With continuing physical therapy, some of Joseph’s motor function will improve over time.

Nordli recalled seeing a photo of Joseph wearing a backpack on the first day of school, only six weeks after his surgery. “Joseph’s brain had already moved many of the functions to the healthy hemisphere; it was a lovely thing to see,” said Nordli.

Added Thompson: “Joseph’s personality is back to what it was before he was having so many seizures. He’s doing great now, and he should continue to do well.”

Children with medically refractory epilepsy due to a stroke, hemimegalencephaly or Sturge-Weber syndrome are also candidates for functional hemispherectomy, provided one hemisphere is healthy. There are other neurosurgeries for refractory epilepsy, such as resection of a partial lobe or dysplastic tissue, or laser ablation.

Roughly 20% of children who develop epilepsy — 53 per 100,000 children per year –will have intractable seizures, Nordli explained. Based on data from 20 years ago, only 27 per 1 million children each year will have surgery for their epilepsy. “With improved diagnostic procedures and less invasive operative techniques, we have seen a steady growth in the number of surgical cases, from two to four pediatric surgeries per year six years ago, to 17 in 2023,” said Nordli. “But at the same time, we are discovering that many patients with intractable epilepsy have gene mutations that are causing their seizures, which surgery won’t fix.”

“But we’re hopeful that our growing knowledge of the genetics of epilepsy will markedly improve pediatric epilepsy treatment in the near future,” Nordli added. “Currently we use broad-spectrum anti-seizure medications to control seizures, but soon we’ll be able to offer more tailored treatments, whether that’s small-molecule drugs or even genetic modifications.”

Other treatments under investigation include the use of lasers or focused ultrasound to ablate epilepsy foci and injections of human stem cells. “We will also be adding an fMRI-EEG machine, the only one in the region, which will enhance our ability to detect minute areas of abnormality,” said Nordli.

“I’ve been treating children with epilepsy for 35 years, and this is the most exciting era of my career because of all the research currently being conducted on epilepsy,” he said. “I’ve never been more hopeful for a cure.”

Children with epilepsy are comprehensively evaluated and cared for by a multidisciplinary team at UChicago Medicine. “Our patients may be treated by a team of physicians and surgeons, rehabilitation specialists, radiologists, EEG technologists, social workers, educational and child-life specialists, and nurses,” said Nordli. “It requires a coordinated effort from a dedicated team of people, along with the right tools and expertise, to provide the state-of-the-art care worthy of a level 4 epilepsy center.”


Source:, Anita Slomski