New study suggests covid increases risks of brain disorders

New study suggests covid increases risks of brain disorders

A study published this week in the journal Lancet Psychiatry showed increased risks of some brain disorders two years after infection with the coronavirus, shedding new light on the long-term neurological and psychiatric aspects of the virus.

The analysis, conducted by researchers at the University of Oxford and drawing on health records data from more than 1 million people around the world, found that while the risks of many common psychiatric disorders returned to normal within a couple of months, people remained at increased risk for dementia, epilepsy, psychosis and cognitive deficit (or brain fog) two years after contracting covid. Adults appeared to be at particular risk of lasting brain fog, a common complaint among coronavirus survivors.

The study’s findings were a mix of good and bad news, said Paul Harrison, a professor of psychiatry at the University of Oxford and the senior author of the study. Among the reassuring aspects was the quick resolution of symptoms such as depression and anxiety.

“I was surprised and relieved by how quickly the psychiatric sequelae subsided,” Harrison said.

David Putrino, director of rehabilitation innovation at Mount Sinai Health System in New York, who has been studying the lasting impacts of the coronavirus since early in the pandemic, said the study revealed some very troubling outcomes.

“It allows us to see without a doubt the emergence of significant neuropsychiatric sequelae in individuals that had covid and far more frequently than those who did not,” he said.

Because it focused only on the neurological and psychiatric effects of the coronavirus, the study authors and others emphasized that it is not strictly long-covid research.

“It would be overstepping and unscientific to make the immediate assumption that everybody in the [study] cohort had long covid,” Putrino said. But the study, he said, “does inform long-covid research.”

Between 7 million and 23 million people in the United States, according to recent government estimates, have long covid — a catchall term for a wide range of symptoms including fatigue, breathlessness and anxiety that persist weeks and months after the acute infection has subsided. Those numbers are expected to rise as the coronavirus settles in as an endemic disease.

The study was led by Maxime Taquet, a senior research fellow at the University of Oxford who specializes in using big data to shed light on psychiatric disorders.

The researchers matched almost 1.3 million patients with a diagnosis of covid-19 between Jan. 20, 2020, and April 13, 2022, with an equal number of patients who had other respiratory diseases during the pandemic. The data, provided by electronic health records network TriNetX, came largely from the United States but also included data from Australia, Britain, Spain, Bulgaria, India, Malaysia and Taiwan.

The study group, which included 185,000 children and 242,000 older adults, revealed that risks differed according to age, with people 65 and older at greatest risk of lasting neuropsychiatric effects.

For people between the ages of 18 and 64, a particularly significant increased risk was of persistent brain fog, affecting 6.4 percent of people who had had covid compared with 5.5 percent in the control group.

Six months after infection, children were not found to be at increased risk of mood disorders, although they remained at greater risk of brain fog, insomnia, stroke and epilepsy. None of those effects were permanent for children. With epilepsy, which is extremely rare, the increased risk was larger.

The study found that 4.5 percent of older people developed dementia in the two years after infection, compared with 3.3 percent of the control group. That 1.2-point increase in a diagnosis as damaging as dementia is particularly worrisome, the researchers said.

The study’s reliance on a trove of de-identified electronic health data raised some cautions, particularly considering the tumultuous time of the pandemic. Tracking long-term outcomes may be hard when patients may have sought care through many different health systems, including some outside the TriNetX network.

“I personally find it impossible to judge the validity of the data or the conclusions when the data source is shrouded in mystery and the sources of the data are kept secret by legal agreement,” said Harlan Krumholz, a Yale scientist who has developed an online platform where patients can enter their own health data.

Taquet said the researchers used several means of assessing the data, including making sure it reflected what was already known about the pandemic, such as the drop in death rates during the omicron wave.

Also, Taquet said, “the validity of data is not going to be better than validity of diagnosis. If clinicians make mistakes, we will make the same mistakes.”

The study follows earlier research from the same group, which reported last year that a third of covid patients experienced mood disorders, strokes or dementia six months after infection.

While cautioning that it is impossible to make full comparisons among the effects of recent variants, including omicron and its subvariants, which are currently driving infections, and those that were prevalent a year or more ago, the researchers outlined some initial findings: Even though omicron caused less severe immediate symptoms, the longer-term neurological and psychiatric outcomes appeared similar to the delta waves, indicating that the burden on the world’s health-care systems might continue even with less-severe variants.

Hannah Davis, a co-founder of the Patient-Led Research Collaborative, which studies long covid, said that finding was meaningful. “It goes against the narrative that omicron is more mild for long covid, which is not based on science,” Davis said.

“We see this all the time,” Putrino said. “The general conversation keeps leaving out long covid. The severity of initial infection doesn’t matter when we talk about long-term sequelae that ruin people’s lives.”

Source:, Frances Stead Sellers, Dan Keating

How Lifestyle Changes Might Reduce Epileptic Seizures

How Lifestyle Changes Might Reduce Epileptic Seizures

For those with epilepsy, some lifestyle modifications might help reduce the number of seizures they experience.

For people experiencing epilepsy, lifestyle changes may be the key to improving seizure control. While more research needs to be done, early evidence suggests that some lifestyle modifications and stress-reducing techniques may be helpful for epilepsy when practiced in combination with taking anti-seizure medication.

Physical Activity

Exercise improves overall health, and in most cases does not worsen seizures. Some physical activity may even help reduce seizures for some people. Before starting a new exercise program, talk with your neurologist about what sports and activities would be safe for you.

Examples of low-risk sports include basketball, soccer, running, walking or dance, while higher-risk sports include climbing, diving, or horseback riding. Swimming can be safe if it is always practiced in the presence of an attentive lifeguard or other capable adult swimmer.

Yoga may be an especially helpful form of low-risk physical activity because it incorporates stress-reducing techniques, although an analysis in 2017 indicated that more high-quality research is needed to determine these effects on the treatment of epilepsy.

Emotional and Psychological Support

Epilepsy may occur in conjunction with stress, anxiety and depression. Research published October 2017 shows that cognitive behavioral therapy, or CBT,can be helpful because of its focus on mindset and behavioral changes to adapt to stress. CBT may lead to a reduction in seizure frequency in some patients. Additionally, in many cases, CBT can improve quality of life, emotional well-being, fatigue and depression.

Mindfulness and meditation, counseling and educational programs have also shown promise. Based on the available research, the International League Against Epilepsy recommended in 2018 that physicians regularly incorporate strategies for psychological well-being into the care of people with epilepsy.

Music Therapy

In the 1990s, it was recognized that listening to certain musical compositions may enhance thinking ability. Since then, this “Mozart effect” has been studied in a variety of neurological conditions. For people with epilepsy, limited research suggests that music therapy may result in reduced seizures and decreased epilepsy-related abnormalities on EEG.

Dietary Changes

Dietary therapy may offer varying degrees of benefit for people with epilepsy. These therapies include diets that are high in fat, adequate for protein and low in carbohydrates. The ketogenic diet is the strictest form. While it’s most likely to significantly reduce seizures, the keto diet also the most difficult of dietary therapy options to manage and maintain.

Alternatives include the modified Atkins diet, medium-chain triglyceride diet and low-glycemic index treatment. One study from the UK, published in 2020, shows that these forms may also result in seizure reduction, although less consistently than with the ketogenic diet.


This treatment involves specific placement of thin needles into the body, and has been studied for treatment of epilepsy, with variable results. A review in 2014 did not support acupuncture as a treatment for epilepsy, while in a 2021 study, a team of researchers from Brazil found a reduction in seizures for a group of patients with temporal lobe epilepsy.

More research is necessary before a conclusion can be reached about the benefits of acupuncture for epilepsy.

Future Research

While each of these approaches holds promise, more research is clearly needed. A new study at the Cleveland Clinic Charles Shor Epilepsy Center is investigating the effect of multiple lifestyle interventions on seizure control and epilepsy-associated health concerns in adults with difficult-to-treat epilepsy.

Up to 1,000 patients will be enrolled and three groups will be compared. The first group will receive yoga therapy and meditation, music therapy or cognitive behavioral therapy; the second group will receive typical epilepsy treatment; and the third group will receive their typical epilepsy care plus regular phone check-ins with a study coordinator.

Patients will keep daily seizure logs and complete health questionnaires at three, six and 12 months to assess seizure frequency and severity, overall health, sleep quality, mood, quality of life, stress, anxiety and depression. Patients will also participate in brief neuropsychological testing to measure attention, processing speed, language, decision making, memory and visuospatial skills.

The hope is that this study and other larger studies will provide results that can empower patients with epilepsy and their caregivers to safely optimize their physical, emotional and cognitive health.


Source:, Elaine Wyllie MD, Elizabeth Spurgeon, M.D.

Study reveals novel mechanism behind epilepsy, drug modulation

Study reveals novel mechanism behind epilepsy, drug modulation

Epilepsy is a neurological disorder that arises from abnormal electrical activity in the brain leading to seizures. These seizure events can have a variety of causes, including genetic variants in a family of proteins that regulate potassium ions in the brain. Researchers at Washington University in St. Louis have led an international team to take a close look at the mechanisms behind the function and dysfunction of these proteins, as well as their interactions with an anti-epileptic drug, to develop a potential new strategy to treat epilepsy.

Jianmin Cui, a professor of biomedical engineering at the McKelvey School of Engineering, and Nien-Du Yang, a doctoral student who conducts research in Cui’s lab, teamed up with Harley Kurata, associate professor of pharmacology at the University of Alberta, and investigated the working mechanism of two potassium ion channels, KCNQ2 and KCNQ3. Their findings uncovered a conserved mechanism for KCNQ channel activation that is a target of both epilepsy-linked mutations and a small molecule compound.


Source:, Beth Miller

House Passes Bill to Expand Cannabis and CBD Research

House Passes Bill to Expand Cannabis and CBD Research

In late July, the U.S. House of Representatives passed H.R. 8454, the Medical Marijuana and Cannabidiol Research Expansion Act (Research Expansion Act). A similar version of the bill, S. 253, passed the Senate earlier this year. The bill is expected to head to President Biden after the bills are reconciled.

Among other things, the bill would ease limitations on medical research on cannabis and cannabidiol (CBD). Specifically, the bill would:

  • Direct the U.S. Drug Enforcement Administration (DEA) to register practitioners to conduct cannabis and CBD research and manufacturers to supply cannabis for research purposes. The bill expressly allows the DEA to register manufacturers and distributors of cannabis or CBD for the purpose of commercial production of a drug approved by the U.S. Food and Drug Administration (FDA).
  • Require the DEA to assess whether there is an adequate and uninterrupted supply of cannabis for research purposes.
  • Permit registered entities to manufacture, distribute, dispense, or possess marijuana or CBD for the purposes of medical research.
  • Clarify that physicians do not violate the Controlled Substances Act (CSA) when they discuss the potential harms and benefits of cannabis and CBD with patients.
  • Direct the U.S. Department of Health & Human Services (DHHS) to coordinate with the National Institutes of Health (NIH) and other agencies to report on the “therapeutic potential” of cannabis for conditions such as epilepsy, the impact of cannabis on adolescent brain development, and cannabis’ effects on the ability to operate a motor vehicle.

Congress continues to debate various measures to legalize and deschedule cannabis, most notably the recently introduced Cannabis Administration and Opportunity Act. The Research Expansion Act presents an important step in the process of federal regulation of the nation’s cannabis industry. This will be the first cannabis-related bill to reach the Oval Office. While the president has not expressed support for full legalization, he has signaled his support for medical cannabis research.


Source:, Andrew Kline, Tommy Tobin

Covid: Brain fog more common two years on, study suggests

Covid: Brain fog more common two years on, study suggests

Two years after having Covid-19, diagnoses of brain fog, dementia and epilepsy are more common than after other respiratory infections, a study by the University of Oxford suggests.

But anxiety and depression are no more likely in adults or children two years on, the research found.

More research is needed to understand how and why Covid could lead to other conditions.

Experts say the virus disrupted daily life as well as making people ill.

Previous research has suggested that adults are at an increased risk of brain and mental health conditions in the six months after a Covid infection.

This study looked at the risks of 14 different disorders in 1.25 million patients two years on from Covid, mostly in the US. It then compared them with a closely-matched group of 1.25 million people who had a different respiratory infection.

In the group who had Covid, after two years, there were more new cases of:

  • dementia, stroke and brain fog in adults aged over 65
  • brain fog in adults aged 18-64
  • epilepsy and psychotic disorders in children, although the overall risks were small

For example, children’s risk of developing epilepsy after Covid was 260 in 10,000, compared to 130 in 10,000 after another respiratory infection.

Their risk of developing a psychotic disorder also increased after Covid – to 18 in 10,000 – but it is still a rare condition.

Some disorders became less common two years after Covid, including:

  • anxiety and depression in children and adults
  • psychotic disorders in adults

The increased risk of depression and anxiety in adults lasts less than two months before returning to normal levels, the research found.


Prof Paul Harrison, lead study author, from University of Oxford’s psychiatry department, said it was “worrying” that some disorders, such as dementia and seizures, are more likely to be diagnosed after Covid-19, even two years later.

But he said it was “good news” that depression and anxiety cases after Covid were “short-lived”, and not seen in children.

The researchers said the numbers affected were “hard to ignore” but were “not a tsunami”, and some would be likely to need medical attention which could add to the pressure on health services.

The study, published in the Lancet Psychiatry, did not track individual people over two years – instead it analyzed the number of people with a new diagnosis two years after their infection.

It also did not look at how severe each condition was after diagnosis or how long they lasted, and whether these are similar after Covid compared with other infections.

They stopped short of calling these conditions “long Covid”, although brain fog – or problems with memory and concentration – is a typical symptom.

Last winter’s Omicron variant was less likely to cause long Covid symptoms than previous variants, recent research suggests.

Although less severe than the Delta variant, Omicron appears to lead to similar risks of brain and mental health conditions, this study found.

‘Societal upheaval’

The study has some limitations – it did not look at how Covid could cause brain and mental health disorders, although some experts say it could be explained by the development of micro-clots in the blood.

Dr Jonathan Rogers and Prof Glyn Lewis, from University College London, who were not involved in the research, said the study highlighted “some clinical features that particularly merit further investigation”, but they added that more studies were needed to confirm the findings.

Prof David Menon, from the University of Cambridge, said the impact of being in hospital with Covid was “equal to 20 years of ageing (between 50 and 70)”.

Paul Garner, emeritus professor in evidence synthesis in global health at Liverpool School of Tropical Medicine, said the Covid pandemic had changed people’s lives in many different ways.

He said the small increases in dementia and psychosis were “more likely to be related to the societal upheaval and dystopia we have been living through, rather than being a direct effect of the virus.”



Pregnant women with epilepsy have more depression, anxiety symptoms

Pregnant women with epilepsy have more depression, anxiety symptoms

MINNEAPOLIS – Pregnant women with epilepsy have more symptoms of depression and anxiety during pregnancy and postpartum than pregnant women who do not have epilepsy or women with epilepsy who are not pregnant, according to a study published in the August 17, 2022, online issue of Neurology®, the medical journal of the American Academy of Neurology.

“The good news is we did not find that pregnant women with epilepsy were any more likely to have episodes of major depression than the other two groups,” said study author Kimford J. Meador, MD, of the Stanford University School of Medicine in Stanford, California, and a Fellow of the American Academy of Neurology. “However, these results underscore the importance of regularly screening pregnant women with epilepsy for any signs of depression or anxiety and providing effective treatment.”

The study involved 331 pregnant women with epilepsy, 102 pregnant women who did not have epilepsy and 102 women with epilepsy who were not pregnant. The pregnant women had study visits during each trimester, around the time of delivery and every three months through nine months postpartum. The women who were not pregnant had visits at comparable time points. At every visit, the women were screened for depression, anxiety and other psychiatric disorders.

There was no difference among the groups in episodes of major depression. However, pregnant women with epilepsy were more likely to have symptoms of depression during pregnancy than the women with epilepsy who were not pregnant had during the same time period. Postpartum, they were more likely to have symptoms of depression than both of the other groups.

During pregnancy, the women with epilepsy had an average score of 7 points on a test of depression symptoms, compared to 6 points for pregnant women without epilepsy and 5 points for non-pregnant women with epilepsy. Scores of 10 or higher indicate mild mood disturbance.

Anxiety symptoms were higher in the pregnant women with epilepsy during pregnancy than in either of the other groups. Postpartum, they were higher than in the pregnant women who did not have epilepsy.

During pregnancy, the women with epilepsy had an average score of 6 points on a test of anxiety symptoms, compared to 5 points for both other groups. Scores of 8 or higher indicate mild anxiety.

While the study did not find a higher rate of major depression among pregnant women with epilepsy, researchers did identify factors associated with major depression. Women who had more than one seizure in the past three months, were taking more than one epilepsy drug, had an unplanned pregnancy or had a history of mood disorders were more likely to have a major depression episode during pregnancy or postpartum.

“Depression is often underrecognized in people with epilepsy, yet we know that effective management of depression can improve people’s quality of life and their overall outcomes for epilepsy treatment, so women with epilepsy should be monitored closely during pregnancy and evaluated when they are thinking about planning a pregnancy,” Meador said.

He noted that while the study was large, not enough women were studied to allow researchers to fully evaluate the impact of individual epilepsy medications on symptoms of depression and anxiety. Another limitation is that women may not recall symptoms that occurred in between study visits.

The study was supported by the National Institutes of Health, National Institute of Neurological Disorders and Stroke and National Institute of Child Health and Human Development.

Learn more about epilepsy at, home of the American Academy of Neurology’s free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life® on Facebook, Twitter and Instagram.

When posting to social media channels about this research, we encourage you to use the hashtags #Neurology and #AANscience.

The American Academy of Neurology is the world’s largest association of neurologists and neuroscience professionals, with over 38,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.



What are dissociation and depersonalization?

What are dissociation and depersonalization?

Depersonalization and disassociation refer to a dreamlike state when a person feels disconnected from their surroundings. Things may seem ‘less real’ than they should be.

These types of sensations vary in severity and can result from a range of conditions, including post-traumatic stress disorder and the use of recreational drugs.

The person may feel as if they are watching themselves from a distance. Some take on a different identity. The person is able to do a “reality check.” They are aware that they their sensations are unusual.

Depersonalization is an aspect of dissociation.

  • Dissociation is a general term that refers to a detachment from many things.
  • Depersonalization is specifically a sense of detachment from oneself and one’s identity.
  • Derealization is when things or people around seem unreal.

Causes and risk factors

The exact cause of dissociation is unclear, but it often affects people who have experienced a life-threatening or traumatic event, such as extreme violence, war, a kidnapping, or childhood abuse.

In these cases, it is a natural reaction to feelings about experiences that the individual cannot control. It is a way of detaching from the horror of past experiences.

According to Mind, a mental health charity based in the United Kingdom, dissociation can be a strategy for calming down, to help a person cope in times of stress.

Neurologically, it may involve an imbalance in brain chemicals.

Risk factors

A number of factors can make a person more likely to experience dissociation and depersonalization.

Recreational drugs

Some recreational drugs affect the chemicals in the brain. These can trigger feelings of depersonalization.

Ketamine: People use this dissociative anesthetic as a recreational drug. They take it because they seek an “out-of-body” experience.

Cannabis use: People have experienced dissociation and depersonalization with cannabis use and withdrawal.

Alcohol and hallucinogens: These may trigger depersonalization in some people

People have reported perceptual disturbances such as depersonalization when withdrawing from benzodiazepines.

As a symptom of another condition

Many people who experience depersonalization also have another mental health condition.

Some kinds of dissociation can occur with the following conditions:

  • depression
  • schizophrenia
  • epilepsy
  • obsessive-compulsive disorder (OCD)
  • phobic disorder
  • post-traumatic stress disorder (PTSD)
  • migraine

Dissociation and depersonalization disorders

According to the National Alliance on Mental Illness (NAMI), dissociative disorders that feature dissociation or depersonalization are:

  • Dissociative amnesia: People forget information about themselves or things that have happened to them.
  • Depersonalization-derealization disorder: This can involve out-of-body experiences, a feeling of being unreal, and an inability to recognize one’s image in a mirror. There may also be changes in bodily sensation and a reduced ability to act on an emotional level.
  • Dissociative identity disorder: A person becomes confused about who they are and feel like a stranger to themselves. They may behave differently at different times or write in different handwriting. This is sometimes known as multiple personality disorder.

In some cultures, people seek to attain depersonalization through religious or meditative practices. This is not a disorder.


Dissociation can happen in different ways.

A study published in Access Advances in Psychiatric Treatment notes that symptoms can include:

  • changes in bodily senses
  • a reduced inability to react emotionally

Here are some of the experiences a person may have:

  • an out-of-body experience, in which they feel as if they are floating away or watching themselves from a distance or as if in a film
  • a sense of disconnection from their own body
  • the feeling that life is a dream, where everyone and everything seems unreal
  • a sense of not being in control of their actions
  • gaps in memory, especially of specific people, events, or periods in life
  • obsessive behavior, for example, repeatedly looking in a mirror to check that they are real

Some people may travel physically to another place and take on a different identity while there. The individual may not remember their own identity.

Anxiety can be a cause or a result of dissociation.


A doctor will ask a person about their symptoms and their personal and medical history.

The doctor may recommend neurological tests to rule out conditions such as epilepsy.

The Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V) lists the following as diagnostic criteria for depersonalization disorder:

  • The person persistently or repeatedly has a sense of depersonalization or derealization.
  • During these experiences, the person is aware that these changes are not reality.
  • These symptoms result in distress and difficulty carrying out routine tasks.
  • The symptoms do not happen because of another disorder or the use of a medication or other substance.


There is no specific treatment for this condition, but medication and counselling may help.


A 2013 review found that doctors may prescribe a combination of medications, specifically lamotrigine (Lamictal), selective serotonin reuptake inhibitors (SSRIs), and other drugs.

However, the authors called for further research to confirm whether the drugs currently in use are suitable. Experts still do not agree on whether people can or should use medication.

Cognitive behavior therapy (CBT)

This type of therapy can help people to see their symptoms in a nonthreatening way. This may help to reduce the anxiety and obsessive behavior that can occur alongside them.


Depersonalization, dissociation, and related experiences can happen for a number of reasons, including PTSD, the use of some substances, and some lifelong conditions.

It can cause worry and anxiety, but a doctor may be able to help if you persistently experience these symptoms.



Shreveport hospital is the first in North Louisiana to offer new way to reduce seizures

Shreveport hospital is the first in North Louisiana to offer new way to reduce seizures

A group of medical professionals have pioneered the path to reducing epileptic seizures in North Louisiana. In late July, a medical team from Ochsner LSU Health Shreveport performed their first implantation of responsive neurostimulation (RNS) device.

This device is designed to reduce epileptic seizures in patients. Ochsner LSU Health Shreveport Neurosurgeon Dr. Jamie Toms implanted the NeuroPace RNS System on a 23-year-old woman suffering from daily epileptic seizures for the last five years.

Since the implantation, doctors say the patient has not suffered a seizure.

How does this RNS device work?

Through a small hole in the skull, electrodes as well as a small pacemaker device are placed in the part of the brain causing the seizures. When the RNS system detects an oncoming seizure, it sends an impulse to that part of the brain to stop it.

The RNS System typically cuts seizure occurrence in half. Doctors are also able to use this system to receive brain wave activity reports via Bluetooth, so they can monitor a patient.

The patient who received this device in late July underwent a series of tests, including a video electroencephalogram (EEG), to determine which area of her brain was causing the seizures.

The groundwork laid by these medical professionals have allowed patients in North Louisiana to remain in town rather than traveling to to Dallas, New Orleans, Little Rock or Birmingham to have this type of procedure.

Ochsner LSU Health Shreveport is the only Level 4 Epilepsy Center in North Louisiana, and bring with them state-of-the-art therapies for brain health including laser therapy, resection surgery, vagal nerve stimulation, deep brain stimulation stereo-electroencephalography, invasive monitoring and video electroencephalography.


Source:, Makenzie Boucher

Scarsdalian Smashes Grueling Guinness World Record to Inspire Other Epileptic Athletes

Scarsdalian Smashes Grueling Guinness World Record to Inspire Other Epileptic Athletes

It is not often people get to witness a Guinness World Record find a new home, but on August 13th at SUNY Purchase, the prestigious award for most sprint duathlons completed in 24 hours was broken by Rowan Haffner. The motive for running 45 miles and biking 108 miles (yes, an 18-year-old did that) is best described by Haffner.

He explained, “The entire motivation behind aiming to set a world record was to raise awareness about what epileptic athletes are capable of. Because of the natural limitations living with Epilepsy can bring, very few people with Epilepsy participate in endurance events. I wanted to demonstrate not only could someone with Epilepsy achieve and finish such a strenuous race, but show that someone with Epilepsy could be the best in the world at something. I hope others can see what I’ve done, and that I’ve helped pave the path for future epileptics to dive into endurance sports and challenge themselves and not let Epilepsy limit their ambitions.”

Jeff Boyer, Haffner’s coach from Barracuda Tri, told of how the preparation for the event is no less strenuous than one would expect – making the accomplishment all the more remarkable.

“Let’s say he wasn’t training for this specifically when he was diagnosed with Epilepsy in November 2021,” Boyer said. “That kind of took the fast-paced draft-legal racing out of his repertoire. That’s when I succumbed to training him for a long course like this. He signed up for Iron Man Lake Placid which took place three weekends ago, and we started training for that in January, and that training helped for this as well.”

For context, Boyer estimated a “typical Iron Man athlete” would need closer to a month to recover from the Lake Placid event before even considering attempting to break this world record. This is just another of seemingly countless reasons why, when the final steps were taken, it is no wonder the rush of emotions hit Haffner hard.

“When I finished, I was immediately flooded with feelings of relief, enormous fatigue, but most prominently pride. This was a goal I set out to do months ago, a goal that required up to 20 hours of training a week to complete and so seeing that come into fruition was emotional and truly incredible.”

The previous record for most sprint duathlons completed in 24 hours was nine full sets. One full sprint duathlon has a 5k run, followed by a 20k bike segment, followed by a 2.5k run. Then, the cycle repeats. Haffner tied the former record at nine full sets, and he determined he had enough gas left in the tank to break it by completing another 5k run. After nearly 2-full-marathon’s worth of running (and enough biking to get from Scarsdale to Philadelphia), Russ Gold, the certifier of the record, was able to confirm Haffner had indeed set out for what he wanted to do: he showed how someone with Epilepsy can be the best in the world at something with flying colors – even in an intense athletic field. The message is worth infinitely more than the Guinness World Record – though the accolade does make the achievement tangible and undisputed..

Gold, a decorated triathlon/duathlon coach and official, acknowledged the uniqueness and rigor of the feat, telling how he would not be shocked in the slightest if this is the only time he is asked to verify this world record. Boyer added, “It takes a certain individual to do something like this. Not so much to say they want to do something like this, but to actually put the work in and do it. It takes a certain mindset, determination, self-motivation to do something like this.”

Regardless of how impressive the feat was – even in the mind of the experts – Rowan is far from finished.

“It’s hard to think about what’s next considering I always want to go one step further than my previous accomplishments,” Haffner admitted. “It’s that mindset that led me to set a world record. Yet I’m still searching for what can be crazier than setting a 19-hour world record. That being said, knowing me, I’ll find something even crazier to do soon enough that is even more challenging than I could imagine.”

Set to be a part of Duke’s club triathlon team, the training never stops. As Boyer memorably said, “This is Rowan’s crazy.” Fortunately, his “crazy” has led him to be the best in the world, portraying the exact message he wanted to inspire people with. Epilepsy could not prevent him from being the best.


Source:, Adam Katcher


This Cincinnati neuroscientist is hoping to find a cure for the disease she has: epilepsy

This Cincinnati neuroscientist is hoping to find a cure for the disease she has: epilepsy

Christin Godale’s life didn’t go exactly how she planned. Her days as a New York fashion model were cut short after her epilepsy went into overdrive and hospitalized her for months.

“I kind of wanted to understand what was happening in my brain. And I had very supportive neurologists and epileptologists at the time, and while I was sitting in my hospital bed they were giving me these medical school books on the brain,” she says.

On that hospital bed that sidelined her modeling career, Godale was determined to become a neurological researcher and cure epilepsy. She received her Ph.d. in neuroscience from the University of Cincinnati.

There is no medicine that cures the disease. Fifty-million people suffer from it worldwide, making it the fourth most common neurological disease.

Godale has been dealing with epilepsy all her life. She’s had to change anti-seizure medication as it becomes ineffective, explaining the drugs cause anxiety, depression and brain fog.

“It really impedes on your life,” she says. “A lot of us would rather experience that than having seizures constantly, because the more you have seizures, the more things change in your brain. The circuitry becomes more hyper-excitable and these abnormal connections form and that causes you to have more seizures.”

In her UC lab, Godale studied how epilepsy develops in the brain and ways to stop it. She recently went to work for CincyTech as its director of life sciences. CincyTech is a public-private seed stage investor. This may have put her in an even better position to find start-ups who can pick up where her research left off.

“I’m very excited about one of our potential investments that focuses on an epilepsy disorder and is also multi-prong, which focuses on Alzheimer’s disease and a couple of diseases in the basal ganglia of the brain.”

CincyTech’s Byron McCauley is excited to have Godale and encourages other young scientists to consider going the investment route.

“We win with great people here. And we have to always have a strong bench because you have to have a pipeline of talent. And that’s what we try to do. We have relationships with the University of Cincinnati and others like Miami (University).”

For Godale, her mission is clear: finding a cure for epilepsy and other diseases, even if some days she doesn’t feel the best.

“I want every person with a disability to know that you can achieve what you want to achieve, and persistence is key,” she concludes. “But you just have to continue moving forward even when you feel like you can’t because you’re going to get there eventually.”


Source:, Ann Thompson

We have a new ally to understand Alzheimer’s or epilepsy: this amazing mini-microscope of just 2.5 centimeters and four grams

We have a new ally to understand Alzheimer’s or epilepsy: this amazing mini-microscope of just 2.5 centimeters and four grams

It weighs less than candy and takes up no more than a snail’s shell, but the “Miniscope”, a tiny microscope developed at the University of California (UCLA), can help us visualize the brain or even Alzheimer’s, epilepsy or autism. Can help unravel mysteries.

UCLA researchers just received a grant four million dollars The National Institutes of Health (NIH), the main US medical research agency, set out to refine and manufacture new versions of its “miniscopes”, designed years ago and which have already been released from laboratories over the past decade to more than half a thousand. has been used in. Worldwide.

Now their goal is to design and assemble the two new prototypes, which the university specifies, among other advances, will allow scientists to “look more deeply” into the brain.

“These are important tools that could be transformative for any neuroscientific question that requires observing the activity of large populations of brain cells in freely behaving animals,” says Dr. Peman Golshani, a professor at UCLA. Is.”

One of the great advantages of a small microscope is its size, so small that it fits snugly in the palm of a hand. The device weighs less than four grams and measures 2.54 centimeters in height. It is small enough that it can fit and assemble into a base plate implanted in the top of an animal’s head. data on their neural activity, The collected material is then sent to a computer via a short cable.

The fact that researchers can handle tools with this wide level of flexibility allows them to collect data on brain functioning in contexts that open up a world of possibilities, such as the interaction of one animal with others. community with.

“Whereas previously neural activity could only be observed with very large and heavy microscopes that had to be fixed in place, the ‘miniscope’ makes it possible to study brain function in animals so that they can explore and help their environment.” are uncover new insights On Social Behavior, Memory, and Neurological Diseases”, UCLA details

Researchers can use it to study neural activity in healthy animals or analyze how their brains behave in different contexts. One of its most relevant advantages is that it can be used with mouse models and delve into the genesis and treatment of neurological disorders such as Alzheimer’s, epilepsy or autism.

As in previous editions, UCLA researchers plan to share information gathered during their work so that other teams can build and operate their “miniscopes.” NIH-funded model will provide High resolution and field of view compared to its predecessors and will make it possible to analyze the structure of brain connections.



Ottawa family struggles to access lifesaving drugs for daughter with rare form of epilepsy

Ottawa family struggles to access lifesaving drugs for daughter with rare form of epilepsy

An Ottawa family is desperate for help, searching for a potentially lifesaving medication for their four-year-old daughter.

Zara Wathra suffers from a rare and serious form of epilepsy, which could send her into a fatal seizure at any moment.

Zara’s condition has worsened in the last month – she has frequent seizures and her parents are struggling to get the help they need. The family has made countless trips to the hospital hoping for a solution, but they feel now they cannot access the one option they have left.

Since infancy, Zara has dealt with a severe form of epilepsy.

“She has lifelong uncontrollable seizures that are very drug resistant,” said Zara’s mother, Tia Wathra.

It is called Dravet Syndrome, and for Zara and her family it has been a four year battle with no end in sight.

“It’s been a very difficult four years. It’s hard to go to work thinking about what’s going on at home, every time the phone rings and I see my wife’s number I’m thinking, ‘Is she having another seizure?’ I feel very depressed a lot of times,” said Zubair Wathra, Zara’s father.

In the last month, Zara’s condition has worsened, now she suffers several seizures a day.

“The last three weeks all these seizures she’s been having, she’s not talking as much anymore, she’s lost a lot of her personality,” said Tia.

Her family has tried multiple treatments but all of them have failed. Now their hopes rest on a single drug, but efforts to access it through CHEO have been unsuccessful.

“It’s very frustrating, we just want her to have access to this medication. I’d like her to have this medication and hopefully make some improvements in her quality of life,” Zubair said.

In an email sent to the family obtained by CTV News, a representative from the hospital’s pharmacy said, “Currently, we are only processing one application at a time because this is a very new process to us.”

“Once we are more comfortable with the application process, we will hopefully be able to process more applications at a time.”

Zara’s mother said, “We feel like we don’t have a lot of time to wait for them to be comfortable applying for her. We think that it’s a right for her to have an application for a potentially lifesaving drug put in for her.”

The family is worried the longer they are forced to wait, the worse Zara’s condition may become.

“The seizures cause damage to the brain, there’s risk of death from seizures. It’s hard to say these things but the risk is there,” said Zubair.

“Every time we go to bed at night, we don’t know for sure if Zara will wake up,” added Tia.

CTV News Ottawa reached to CHEO several times for official comment but did not receive a response by the time this article was published.

It means this family is still waiting without a timeline, hoping for access to the drug that could save their daughters life before it is too late.


Source:, Jeremie Charron

5 inhumane mental health treatments that paved the way for future research

5 inhumane mental health treatments that paved the way for future research

Key Takeaways

  • Healthcare has come a long way over time; many bygone mental health treatments are now considered dangerous, invasive, and barbaric compared to modern science.

  • Questionable treatments include bloodletting, lobotomies, trepanation, tooth extraction, and convulsive therapy.

  • Neurologists and other healthcare professionals (HCPs) can continue to learn from the mistakes of the past to ensure safe and healthy practices for today’s patients with mental illness.

Patients with mental illness have been exposed to extreme—and at times inhumane—treatments throughout history, from lobotomies and electric shock to bleeding people out in the 16th century.

Here’s a look at five of the most extreme methods of treating mental illness in history, and how some have led to more legitimate techniques for current treatment options.


Bloodletting is an ancient medical practice that began roughly 3,000 years ago in Egypt, but has become most synonymous with its usage in the Middle Ages, as documented in an article published in History.

Before human anatomy was completely understood, scientists believed the body was made up of four humors (liquids): blood, urine, black bile, and yellow bile. If all four humors were balanced, it meant you were healthy. An excess of any one of them signified illness; bloodletting was a common treatment for this supposed “imbalance.”

To administer this treatment, a lancet (a small, razor-like blade) sliced open the skin, followed by cupping, which involved placing a dome-shaped glass over the wounds and using its suction or prior heat to extract the air. An alternate method for this also used leeches in lieu of cups, whereby an average leech extracted 5 to 10 ml of blood.

This practice ultimately became obsolete due to its dangerous side effects. Large quantities of blood loss often led to respiratory problems, fainting, or infections as a result of unclean blades. Death or hemorrhagic shock resulted as well.

According to an article published in Blood Transfusion, bloodletting is used very rarely nowadays—only for rare conditions such as hemochromatosis, polycythemia vera, and porphyria cutanea tarda.


This came to light after archeologists discovered ancient skulls that were circularly fractured and full of holes—a direct result of trepanation, according to an article published by Mental Floss. But what is this antiquated term, and is it still used today?

In ancient days, mental illness was believed to be caused by the presence of a demon or evil spirit within the body. Doctors drilled “doors” into the skulls of mentally ill patients as a way for the demon to escape the patient’s brain.

Despite being ineffective from a scientific standpoint, trepanation persisted as a popular treatment for mental illness until the early 20th century. Although it is not widely practiced today, it is still purported by organizations like International Trepanation Advocacy Group.


First performed by neurologist Egas Moniz in 1935, a lobotomy is a medical procedure meant to “cure” all mental illness through the insertion of sharp instruments into the brain. After these holes were created, pure ethanol was poured inside them to destroy neural connections to the frontal lobe—the part of the brain responsible for higher cognitive functions like memory, problem-solving, and emotions, according to a 2022 article published in PsychCentral.

Some patients reported signs of improvement, but others were left with permanent brain damage, and likely even more with mental trauma.

Although this procedure hasn’t been performed in the US since 1967, it was popular in the early 20th century. Lobotomies are still technically legal in the US, but a more refined type of psychosurgery called a cingulotomy is now used in its place, as noted by PsychCentral. A cingulotomy targets specific areas of brain tissue for patients with severe obsessive-compulsive disorder who haven’t responded to previous treatment.

Extreme extraction

Henry Cotton, MD, served at the Trenton Psychiatric Hospital in New Jersey for 26 years during the early 20th century, and was known for the highly experimental treatments he performed on the mentally ill. He believed mental insanity stemmed from untreated infections in the body, and frequently extracted patients’ teeth to purge their illness, as recounted by All That’s Interesting

When extracting teeth proved unsuccessful, Dr. Cotton began removing other body parts including tonsils, gallbladders, ovaries, testicles, stomachs and colons. At the end of his time at Trenton, he had removed over 11,000 teeth and performed 645 major surgeries. In the 1930s, an investigation by the director of the New Jersey Department of Institutions and Agencies put an end to his practices.

His work is of note as it’s an example of “progress” in the wrong direction; whereby he seemingly reduced a patient to their illness instead of viewing them as a person.

Medically induced seizures

In the late 1920s, Hungarian pathologist Laszlo Meduna introduced a type of specialized therapy for patients with schizophrenia. He believed schizophrenics would be calmer and happier after having a seizure, such as was observed in patients with epilepsy after convulsions, according to an article published in The British Journal of Psychiatry.

Dr. Meduna used metrazol, a chemical that stimulates the circulatory and respiratory systems, on his patients. His treatments, although less inhumane than previous methods, were still highly unsuccessful. As noted in British Journal of Psychology, only two of his first five patients showed improvement after treatment, but there is no direct evidence linking this to Dr. Meduna’s practices.

Even so, Dr. Meduna influenced the discovery of a more stable and effective form of convulsive therapy: electroshock. Meduna’s methods were quickly abandoned, perhaps for the best.


Source:, Sarah Butkovic

Pregnancy week by week

Pregnancy week by week

Epilepsy and pregnancy: What you need to know

If you have epilepsy becoming pregnant might seem risky. But the odds are in your favor. Find out how to promote a healthy pregnancy.

Epilepsy during pregnancy raises special concerns. While most people who have epilepsy deliver healthy babies, you might need special care during your pregnancy. Here’s what you need to know.

Does epilepsy make it more difficult to become pregnant?

Epilepsy alone doesn’t have an effect on your ability to get pregnant. Some drugs used to treat seizures might make it more difficult to become pregnant, though. And certain anti-seizure medications can reduce how well hormonal birth control methods work. If you’re thinking about having a baby, ask your health care provider if you need to make changes to your medication.

How does epilepsy affect pregnancy?

There is a risk of the following problems when a seizure happens during pregnancy:

  • Slowing of the fetal heart rate
  • Decreased oxygen to the fetus
  • Preterm labor
  • Low birth weight
  • Premature birth
  • Trauma to the mother, such as a fall, that could lead to fetal injury, premature separation of the placenta from the uterus (placental abruption) or even fetal loss

How high your risk is for these concerns depends on the type of seizure you have. Talk to your health care provider about your level of risk.

Does epilepsy change during pregnancy?

Everyone’s body reacts differently to pregnancy. For most pregnant people who have epilepsy, the number of seizures remains about the same, or seizures become less frequent. For others, particularly those who are sleep deprived or don’t take medication as directed, pregnancy can increase the number of seizures.

What about medication?

The medication you take during pregnancy can affect your baby. Birth defects — including cleft palate, neural tube defects, skeletal problems, and heart and urinary tract problems — are some of the potential side effects associated with anti-seizure medications. The risk seems to increase with higher doses and if you take more than one anti-seizure medication.

If you haven’t had a seizure for nine months before you conceive, you’re less likely to have a seizure during your pregnancy. If you haven’t had a seizure for 2 to 4 years, you might be able to taper off medications before you conceive to see if you remain seizure-free. Talk to your health care provider before you stop taking any of your medications.

For most people, it’s best to continue epilepsy treatment during pregnancy. To minimize the risks, your health care provider will prescribe the safest medication and dosage that’s effective for your type of seizures. Seizure medication levels may be monitored throughout your pregnancy.

How should I prepare for pregnancy?

Before you try to become pregnant, make an appointment with the health care provider who will handle your pregnancy. You may want to talk with a provider who specializes in high-risk pregnancy. Meet with other members of your health care team, too, such as your primary care provider and your neurologist. They’ll evaluate how well you’re managing your epilepsy. Your providers may also consider treatment changes you might need to make before you become pregnant.

If you have frequent seizures before you become pregnant, you might be advised to wait to get pregnant until your epilepsy is better controlled.

Take your anti-seizure medication exactly as prescribed. Don’t adjust the dose or stop taking medication without talking to your health care provider. Uncontrolled seizures likely pose a greater risk to your baby than medication does.

It’s also important to make healthy lifestyle choices:

  • Eat a healthy diet.
  • Take prenatal vitamins.
  • Get enough sleep.
  • Avoid caffeine, cigarettes, alcohol and illegal drugs.

Why is folic acid important?

Folic acid helps prevent serious problems with the brain and spinal cord called neural tube defects. The American College of Obstetricians and Gynecologists recommends women with epilepsy take a daily multivitamin that includes 0.4 milligrams of folic acid. Your health care provider may suggest a higher dose based on your situation. It’s best to start taking a folic acid supplement three months before you get pregnant.

What can I expect during prenatal visits?

During pregnancy, you’ll see your health care provider often. Your weight and blood pressure will be checked at every visit. You might need frequent blood tests to monitor your medication level.

If you’re taking anti-seizure medications, your health care provider may advise that your baby be given vitamin K at the time of birth. This can help prevent rare bleeding problems that have been found in some infants born to people who have epilepsy. In some cases, taking vitamin K during the last month of pregnancy might be recommended.

What if I have a seizure when I’m pregnant?

Seizures can be dangerous, but many people who have seizures during pregnancy deliver healthy babies. Report a seizure to your health care provider right away. Your medication might need to be changed. If you have a seizure in the last few months of your pregnancy, your health care provider may monitor your baby at the hospital or clinic.

How can I make sure my baby is OK?

Your health care provider will monitor your baby’s health throughout the pregnancy. You might have frequent ultrasounds to track your baby’s growth and well-being. Your health care provider might suggest other prenatal tests, as well.

What about labor and delivery?

Most people who have epilepsy deliver their babies without problems. Seizures don’t often happen during labor. If you have a seizure during labor, it might be stopped with intravenous medication. If the seizure lasts a long time, your health care provider might deliver the baby by C-section.

If your anti-seizure medication dosage is changed for pregnancy, talk to your health care provider about returning to your pre-pregnancy levels shortly after your baby is born. This will help keep your seizures under control and your medication at safe levels.

Will I be able to breast-feed my baby?

Breastfeeding is encouraged for most people who have epilepsy, even those who take anti-seizure medication. Discuss breastfeeding with your health care provider ahead of time. You may need to take your medication after a feeding. And sometimes a change in medication is necessary.


Source:, Mayo Clinic Staff

Epilepsy: how an AI algorithm detects related brain abnormalities – new research

Epilepsy: how an AI algorithm detects related brain abnormalities – new research

Around 50 million people worldwide have epilepsy. While anti-seizure medications are available and effective for the majority of people with the condition, 20%-30% don’t respond to medications.

Abnormalities in the brain are one of the leading causes of this drug-resistant epilepsy, which is usually identified by MRI scans before surgery is carried out to cure the patient. However, identifying these abnormal areas from MRIs is an ongoing challenge for clinicians, as these scans can look normal.

We wanted to see if an artificial intelligence (AI) algorithm could help find these subtle brain abnormalities (known as focal cortical dysplasia or FCD). Our results, published in the journal Brain, show the AI was successful in detecting abnormalities in two thirds more cases than MRI scans alone.

How does the AI work?

To develop a reliable AI algorithm you need to train it on examples from a wide variety of patients.

Individual epilepsy surgery centers typically treat only small numbers of patients each year with this abnormality, so we created the Multicenter Epilepsy Lesion Detection project (MELD) to collect over 1,000 MRI scans from 22 centers across the world. We then used this data to train an AI algorithm to detect these abnormalities.

To develop the algorithm, we quantified features from the MRI scans, such as how thick or folded the brain surface was, and measured these at around 300,000 locations in each participant’s brain.

Expert radiologists in our team then labelled areas on the MRI scans as either being healthy or abnormal. We then trained the algorithm to recognize patterns of features that characterize this particular FCD brain abnormality.

We found that, overall, our algorithm was able to detect these abnormalities in 67% of patients. A third of patients had previously had their MRI scans reported as normal – the brain abnormality had been missed by radiologists.

Despite these lesions being particularly challenging to see by eye, the algorithm was still able to detect 63% of them in this third of patients. This is particularly important, as if doctors can find the abnormality in the brain scan, then surgery to remove it can provide a cure.

Black boxes

One common problem with AI algorithms is that they are “black boxes”, meaning they learn patterns from data rather than being explicitly programmed to make decisions. This can make it difficult to understand how they make these decisions.

We put an emphasis on creating an AI algorithm with predictions that could be interpreted, through calculating which features contributed most to the final prediction. The information the algorithm used is summarized into a report that highlights where in the brain the AI thought was abnormal and why.

The AI algorithm is not perfect, and one key step when incorporating this type of technology into clinical practice is confirming whether the AI’s findings are true brain abnormalities or due to MRI artefacts. For example, MRI scan quality is often not the best and can be affected by the patient moving in the scanner, which results in the image being unclear and blurred.

The reports therefore need to be considered alongside other investigations that patients undergo as part of planning their epilepsy surgery.

Excitingly, a number of epilepsy surgery hospitals are now using the MELD algorithm in this way. We have begun collecting more data, from a wider number of causes of epilepsy, which will be used to create more powerful diagnostic AI algorithms.

Our study on FCD detection uses the largest MRI cohort of FCDs to date, meaning it is able to detect all types of these abnormalities. The algorithm can be run by hospitals around the world on any patient with a suspicion of having an FCD who is over the age of three and has an MRI scan. To give one snapshot, around 440 children a year in England could benefit from epilepsy surgery.

The MELD algorithm could help to find more hidden lesions in children and adults with epilepsy, and enable more people with epilepsy to be considered for brain surgery that could cure their epilepsy and improve their cognitive development.


Source:, Beth Daley

What Happens To Your Body When You Have A Seizure

What Happens To Your Body When You Have A Seizure

Watching a loved one have a seizure or experiencing one of your own can be extremely frightening. There’s an association between seizures and epilepsy, but the World Health Organization (WHO) clarifies that a single seizure doesn’t necessarily indicate epilepsy. A formal diagnosis of epilepsy is given when a person experiences at least two unexpected seizures. There are many contributors to epileptic seizures, such as a tumor or infection in the brain, genetic syndromes, a stroke, or head injuries. Many seizures can be managed with medication, as the WHO reports that 70% of epileptic individuals who are treated with anti-seizure medications could eventually become free of seizures.

Besides being connected to epilepsy, the Cedars-Sinai Medical Center explains that it’s also possible for non-epileptic seizures (NES) to occur. These may be a result of stress, being in an accident, or having physical conditions like diabetes or heart disease. NES can even be triggered by being bullied or abused. Additionally, people with psychological conditions such as depression and anxiety are more likely to experience NES. NES can be unresponsive to anti-seizure medication, and psychotherapy is a common treatment option.

In order to treat seizures and improve the lives of those who struggle with them, identifying what happens to the body during a seizure is important for medical professionals. Having a clear understanding of what goes on during a seizure may also help you care for someone having one, or know what to expect if you experience one yourself.

What’s happening to the body during a seizure?

Seizures are sometimes described as “electrical storms in the brain” (per Epilepsy Foundation). According to the Foundation, there are stages of a seizure that not everyone will experience, yet are important to recognize. Some initial warning signs that can signal the beginning of a seizure are categorized as “prodrome” and “aura.” Prodrome describes sensations and changes in behavior that some individuals experience before the onset of a seizure. This phase is worth noting as it can help someone prepare for a seizure by taking their medication or using a rescue treatment. The aura phase is another warning signal that is considered part of the seizure.

Before a seizure, someone may experience déjà vu, racing thoughts, panic, blurred vision or loss of vision, and unusual smells, sounds, and tastes. They can become lightheaded, have nausea and a headache, or experience numbness or tingling in their body. On the other hand, they may even experience pleasant feelings.

During a seizure, some symptoms include a complete loss of awareness (“blacking out”), confusion, distractibility, forgetfulness, losing the senses of vision and hearing, feeling detached from the body, or having hallucinations. Someone can have trouble speaking to others, may drool and have difficulty breathing, have tremors and convulsions, and their muscles can become rigid. They may also lose consciousness.

If you or someone you love experiences seizures, the Epilepsy Foundation wants to remind you that you aren’t alone, and that there is social support available for you.


Source:, Erin Demmer

New hope for patients with rare epilepsy

New hope for patients with rare epilepsy

Thousands of children face seizures, developmental delays, and possible death from Dravet Syndrome. A new treatment built on Michigan Medicine research could help.

Zain Tello grips a flyswatter, his big, brown eyes widening as he pretends it’s a double-bladed ax, just like Paul Bunyan’s.

He loves tall tales, like Bunyan and John Henry, says his mother, Susie Luebke. It makes sense, given the 8-year-old’s life. The stories are full of characters tackling enormous obstacles.

Tello, who is from Ann Arbor, began having seizures when he was 5 months old, including some so severe he had to be intubated in the ICU. At age 3, he was diagnosed with Dravet Syndrome, a rare, genetic epilepsy. In addition to seizures, it can cause cognitive and developmental delays and carries a high risk of sudden unexpected death in epilepsy, or SUDEP.

When Tello was diagnosed, treatment options for Dravet were limited. Now, he’s the first patient in Michigan to enroll in a clinical trial for a new investigational medicine.

How he got there is an epic tale of collaboration, innovation, and care that follows a path from basic research in Michigan Medicine laboratories to the treatment that could change Tello’s life – and the lives of thousands of other patients with Dravet Syndrome.

“I look at Zain almost as a little pioneer man to lead this way forward for us,” said Sucheta Joshi, M.D., professor of pediatrics, Tello’s pediatric neurologist, and the medical director of pediatric epilepsy at C.S. Mott Children’s Hospital.

Building a foundation of basic science

Lori Isom, Ph.D. – the Maurice H. Seevers Collegiate Professor of Pharmacology and chair of the department – has always been thrilled by basic science.

Her 30 years of research have focused on studying sodium ion channels: gateways in the membranes of neurons, cardiac myocytes, and other cells. The correct flow of sodium ions through these channels is the basis of electrical signaling in the body.

Isom’s colleague, Miriam Meisler, Ph.D., the Myron Levine Distinguished University Professor of Human Genetics, was among the first scientists to show that sodium ion channels are associated with Dravet Syndrome. Isom and her team study mice with faulty sodium channels to mimic the disease, providing a model for research.

Human genome mapping later showed about 80% of Dravet patients have variants in the gene SCN1A – which tells the body how to build an important sodium channel in the brain.

People with variants that cause Dravet have one typical copy of SCN1A and one that doesn’t function correctly. As a result, the body doesn’t make enough healthy versions of the channel, leading to epilepsy.

Connecting the brain and the heart

Isom and her team were the first to figure out that SCN1A variants affected the flow of sodium in cells in the heart as well as in the brain.

“That’s how basic science intersects with clinical medicine,” Isom said. “If you are a sodium channel biologist, and you know the same genes are expressed in the heart that are expressed in the brain that make epilepsy happen, you think, ‘Hey, could these things be linked?’”

Isom’s lab examined three different mouse models of genetic epilepsy and found cardiac arrhythmia in all three.

Isom turned to a longtime colleague at Michigan Medicine to further understand the effects of the link. Jack Parent, M.D., is a physician-scientist, the William J. Herdman Professor of Neurology and co-director of the Comprehensive Epilepsy Center.

Parent and Isom have collaborated since 2008, drawn together by a shared interest in research to stop SUDEP and supported in part by families that have been impacted by a SUDEP tragedy.

As a clinician, Parent sees patients with epilepsy at Michigan Medicine. Through their work with the Dravet Syndrome Foundation scientific advisory board and the American Epilepsy Society, he and Isom have met Dravet patients and their families from all over the United States. They’ve seen family members’ fears as they raise children with this difficult to treat, and often deadly, disease.

“What’s really scary to families is Dravet has perhaps the highest incidence of SUDEP of any of the epilepsies. That’s the most catastrophic consequence,” Parent said. “They have that hanging over their heads. Even though the seizures tend to improve later in life, patients still have cognitive impairment and develop gait abnormalities and other problems, so it’s really a lifelong disease.”

Medicine at Michigan

Parent specializes in working with induced pluripotent stems cells. He can take skin or other cells from epilepsy patients and convert them into stem cells. He then transforms them into brain or heart cells, creating research-ready cell lines with the same genetic variants as the patients.

Parent made heart cells from patients with three types of genetic epilepsy. Isom examined them, again identifying indicators of arrhythmia. In 2018, they looked at heart cells from a cohort of Dravet patients, leading to similar results – and allowing them to alert one child’s doctor to a heart abnormality before it was diagnosed.

Leaping from the lab to the clinic

Isom and Parent presented their work at an American Epilepsy Society meeting in 2018. A representative from a biotechnology company, Stoke Therapeutics, attended their talk and approached them with an idea for treating Dravet based on their foundational research into the effects of SCN1A variants.

Isom knew she could test the treatment with her mouse models, and Michigan Medicine’s Fast Forward Medical Innovation program helped facilitate discussions with Stoke. The researchers were poised to do the work.

“The basic science is precious. It’s foundational. We can’t do anything else without basic science. But now we have to take that a step further,” Isom said. “And that’s what pharmacology is, right? Our goal is to use our basic knowledge to benefit public health.”

When Isom’s team began testing Stoke’s investigational therapy, they were stunned.

“It was incredible,” Isom said. “We went from seizures and SUDEP in 70% of the mice to almost none.”

The treatment directly targets the cause of Dravet: the SCN1A gene. The medicine tells brain cells to amp up expression of the healthy copy of the gene. The cells then generate more of the protein that makes up the important sodium channel, which compensates for the faulty gene variant.

The researchers and their collaborators published a paper about the study in Science Translational Medicine in August 2020, showing that Stoke’s treatment led to more healthy sodium channels in Isom’s mice.

These results served as evidence for the U.S. Food and Drug Administration to allow clinical trials. Working with researchers around the country, Stoke launched the multi-center MONARCH Study to test their medication. Michigan Medicine is a site for this pivotal trial.

The first group of human subjects received treatment in August 2021. Tello received his first dose this spring.

Waiting for a cure

Zain Tello and his mom Susie enjoy a nature walk in late winter.

Dravet has shaped not only Tello’s life, but also his entire family’s.

“It doesn’t just affect the child, it affects the whole family in ways you don’t understand until you’re in it, good and bad,” Luebke said. “But it’s a whole family experience. It’s not just the child having seizures.”

Tello is the youngest of six siblings. His big brothers and sisters, ages 13 to 25, have learned patience and understanding from growing up with him, Luebke says. They know, for example, they might not be able to go out on a hot day because it triggers his seizures. They know family camping trips have to be limited to routes close to children’s hospitals. They also know their sweet, exuberant little brother adores them.

“He tells each of them, ‘I love you the most,’ and hugs them, and then you’ll hear him go say it to someone else,” Luebke said.

When Tello was diagnosed, it was in part a relief – at least they knew what was wrong. But it was hard to learn there wasn’t a simple solution. Some medications that help children with other epilepsies aren’t good for kids with Dravet. Other treatments might reduce seizures but cause serious side effects.

“You want something to work, but you never know what’s going to happen,” Luebke said. “The seizures could get worse, get better. At one point we were on maybe four different medications, trying to get them stable. You’re just hopeful that something would work.”

The seizures aren’t Tello’s only challenge. He’s on the autism spectrum and has severe developmental and cognitive delays from Dravet. Finding a good fit for his education has been hard, Luebke says, especially during the pandemic. She’s become an “accidental homeschooler” – Tello can’t attend virtual school because screens trigger his seizures.

Tello has difficulty with communication and speech, but he’s outgoing and friendly. He calls his siblings his best friends and loves visiting his doctors at Mott.

Luebke says they’re blessed to have a doctor like Joshi, who has specialized knowledge from treating other children with Dravet. Luebke, like many parents of children with rare diseases, gathers all the information she can to advocate for her son.

“I feel here that our family’s cares and concerns are taken seriously, and that we’re more of a partner in our care,” she said. “We feel supported.”

Luebke is part of a Dravet Syndrome Foundation group for caregivers and knew about the MONARCH Study before it launched. She was eager to enroll her son, especially because the trial was available so close to home.

She’ll take any opportunity for him to have fewer seizures, and she hopes to find a treatment that improves his other issues as well.

But her biggest dream for him is simple: “I hope that he’s happy, and he has a good quality of life,” she said. “I think that’s it.”

Expanding understanding of Dravet

Tello also participated in a multi-site control study designed to come before MONARCH: The BUTTERFLY Observational Study. The principal investigator for the Michigan Medicine site was Julie Ziobro, M.D., Ph.D., assistant professor of pediatrics and a pediatric epileptologist.

Zain greets a neighborhood dog while out for a walk.

Because all the children who participate in MONARCH will receive Stoke’s medicine, rather than any group receiving a placebo, the BUTTERFLY Study serves as the baseline for the clinical trial. Researchers documented the neurocognitive abilities of Tello and other children with Dravet, examining the effects of the disease beyond seizures. They’ll be able to compare these results with those from children who receive Stoke’s treatment.

Ziobro was drawn to Michigan Medicine because of its supportive and collaborative atmosphere. “When I started my pediatric neurology training, I realized that there’s this whole realm of genetic epilepsies that are difficult to treat,” she said. “But we have all these new things on the forefront that I really wanted to be a part of.”

Ziobro is now working on both ends of the research spectrum at Michigan Medicine: the clinic and the lab. In addition to treating Tello and other patients and leading the BUTTERFLY Study, she’s been working with Isom and Parent on further research to understand how Dravet affects the heart.

Parent and Isom are working on multiple other projects to continue investigating SUDEP and ways to help patients with Dravet and other genetic epilepsies.

One, supported by a National Institutes of Health grant, aims to identify biomarkers that would predict SUDEP risk in children. The researchers are using patient-derived heart cell lines and mouse models to investigate two different genes associated with high vs. low SUDEP risk, respectively, comparing them to see whether the high SUDEP risk cells correlate with abnormal cardiac excitability.

“These kids are typically not evaluated by pediatric cardiologists, and we’re going to figure out whether they really should be,” Parent said. “That might change clinical practice.”

Looking forward to organoid research and early detection

Parent is also expanding his stem cell work, using patient-derived cells to create organoids – 3-D clusters of cells. These are better models for drug discovery than typical 2-D cell lines, Isom says, because they mimic brain networks and architecture.

“It’s the most fascinating thing I’ve ever seen,” she said. “You can record from them, you can make brain slices from them, you can record neuronal activity.”

The researchers anticipate that organoids grown from Dravet patients’ cells will show different development than those from people without Dravet.

They are also using their mouse model to investigate whether the Stoke treatment might ease Dravet’s behavioral effects as well as seizures – and trying to determine how early in life the medication should be given to have the greatest benefit.

One of Isom’s biggest hopes for the future is that SCN1A will be included in newborn screening panels. Joshi says this would allow doctors to start treating children even before they showed symptoms.

“If we get to the point where we have a handful of epilepsies where we have these kinds of targeted treatments, diagnosing these kids very, very early would also be something I would love to see happen,” Joshi said. “Those would be great things to look forward to in the future.”

Collaborating exponentially for the future

The future is on the mind of every researcher and clinician who works with Dravet at Michigan Medicine. In the past few years, their collaborative work has unraveled mysteries and opened the door to immense possibilities.

Zain enjoys jumping and playing outside.

“There is no way either one of our labs could have done this by ourselves,” Isom said. “And it’s not just additive, it’s synergistic. It’s exponential.”

In a few years more, they hope, the future will be even brighter for children like Tello.

“We’re all anxiously awaiting to see how this drug trial plays out,” Ziobro said. “Zain’s story is still being written.”


Source:, Tara Roberts

Van Gogh: hidden art, hidden disability

Van Gogh: hidden art, hidden disability

Over a century after his death, iconic artist Vincent Van Gogh reminds us that epilepsy is often a hidden condition.

In July, much of the world was shocked to hear that a previously hidden Van Gogh self-portrait had been found on the reverse of one of his paintings. The portrait, discovered by curators at the Scottish National Gallery, received international media attention and critical acclaim.

But for the Epilepsy Society, it held a very different kind of interest. Van Gogh was diagnosed with epilepsy and wrote frequently about the condition. There is a certain symmetry to an artist diagnosed with epilepsy “hiding” a self-portrait behind another artwork. Epilepsy is often viewed as a hidden disability because it is not usually obvious that someone has the condition unless they have a seizure.

Not all symptoms of epilepsy are apparent to others and of course, seizures are not the only aspect of epilepsy. Many people with epilepsy experience memory issues and there is a heightened risk of depression and anxiety. Even seizures can be very subtle with the person looking confused, distant or not engaging with their environment. Observers may not be aware that this is due to epilepsy. In the same way that Van Gogh’s portrait could not stay hidden forever, we hope that epilepsy as a condition will emerge from the shadows and gain greater awareness amongst the general public.

The Van Gogh Gallery notes that the Dutchman’s doctors believed (opens in external website) he had temporal lobe epilepsy, a claim backed up (opens in external website) by Amsterdam’s Van Gogh Museum. Experts have also said that Van Gogh’s use of digitalis to treat epilepsy may have contributed to his love of bright colours. One side-effect of digitalis is that the patient sees the world through a yellow-tinted lens. The Sunflowers, anyone?

While Van Gogh is usually listed as the most famous historical figure with epilepsy, there have been many other world-leading artists, politicians and scientists with the condition. From Julius Caesar to Prince and from Socrates to Lewis Carroll, there is evidence that many iconic individuals had epilepsy.

By sheer coincidence, our Policy and Public Affairs Manager, Nathan, happened to be visiting Edinburgh for a few days and was fortunate to get advance tickets to see the Van Gogh self-portrait, making him one of the first people in the world to do so. Nathan attended the special press preview of “A Taste for Impressionism: Modern French Art from Millet to Matisse” to see the rediscovered artwork.

It was only when conducting an X-ray of the Van Gogh painting “Head of a Peasant Woman” that staff at the Scottish National Gallery discovered the outline of a ghostly bearded man in a brimmed hat. It soon became clear that this mysterious figure was none other than Van Gogh himself. As an impoverished artist, he reused canvases in order to save money, simply turning the canvas over and painting on the reverse. There are currently eight known self-portraits of Van Gogh painted on the back of other works. When the Head of a Peasant Woman was lent to an exhibition in Amsterdam in 1905, it is believed they stuck the canvas on cardboard and framed it, thus hiding the self-portrait for well over a century.

Van Gogh died in 1890, at a time when understanding of epilepsy was very different. Just two years later, the Epilepsy Society was founded in Chalfont St Peter, Buckinghamshire and in the lifetime of the Society we have seen many changes. While, sadly, the stigma affecting people with epilepsy remains, there is much greater awareness than in Van Gogh’s day.

Van Gogh led a troubled life, but he was also one of the world’s greatest artists. He continues to remind us of the importance of shining a light on the hidden parts of life.




Medicaid Expanding Offerings For Kids With Severe Needs

Medicaid Expanding Offerings For Kids With Severe Needs

Federal Medicaid officials are issuing new guidance aimed at making it easier for children with complex medical conditions like severe autism and cerebral palsy to access the care they need, even if that means crossing state lines.

Under a new optional program, states can receive a temporary bump in federal Medicaid funding to create a “health home” benefit.

The offering, established by Congress in 2019, is designed to address the needs of children with significant health issues who require specialized care that often necessitates traveling out of state, according to the Centers for Medicare and Medicaid Services.

In a 15-page letter sent last week to state Medicaid directors, CMS is now detailing how states can partake in the new program, which will begin Oct. 1.

“Every child deserves the care and support they need to stay healthy and thrive. This new Medicaid health home benefit will give states new options and financial incentive to improve care for children with complex medical conditions,” said Secretary of Health and Human Services Xavier Becerra.

The “health home” program can cover Medicaid-eligible children under age 21 with a “life-limiting illness or rare pediatric disease” or “one or more chronic conditions that cumulatively affect three or more organ systems and severely reduces cognitive or physical functioning (such as the ability to eat, drink, or breathe independently) and that also requires the use of medication, durable medical equipment, therapy, surgery, or other treatments,” the guidance indicates. Chronic conditions can include cerebral palsy, spina bifida, epilepsy and severe autism, among others, CMS said.

With the program, “states can cover coordination of care for children with medically complex conditions, including coordination of the full range of pediatric specialty and subspecialty medical services and coordination of care and services from out-of-state providers,” the guidance states.

Out-of-state medical services should be covered just like in-state offerings if they are “more readily available in the other state” or if it is “general practice for beneficiaries in a particular locality to use medical resources in another state,” the letter indicates.

States that choose to offer the benefit will receive a 15-percentage point increase in federal matching funds for costs associated with the service during the initial two quarters as well as ongoing technical assistance from CMS.

“This new state plan option is about ensuring that children and families can get coordinated, high-quality care — particularly children with complex medical conditions,” said CMS Administrator Chiquita Brooks-LaSure. “CMS is committed to working with states interested in pursuing this option to ensure they can quickly and efficiently get kids the care they need.”


Source:, Michelle Diament

Fewer Cures, Costlier Energy

Fewer Cures, Costlier Energy

The so-called Inflation Reduction Act has at its heart the most foolish trade-off imaginable.

The so-called Inflation Reduction Act will be one of the greatest misallocations of federal resources in American history. The bill has many moving parts, but here’s a simple way to sum up its macroeconomic impact: It would transfer about a quarter of a trillion dollars from America’s pharmaceutical industry, which saves and extends lives, to the climate-change industrial complex, which makes energy more expensive.

The former industry has produced the majority of the world’s 40 most recent wonder drugs. Covid-19 vaccines and treatments alone probably saved hundreds of thousands of lives and restored trillions in economic activity. The industry has provided life-saving and pain-reducing treatments, contributing to reductions in death rates from cancer and heart disease by half over the past 50 years. The pharmaceutical industry spends roughly $100 billion a year in research and development—on the race for the next generation of cures and treatments for Lou Gehrig’s disease, cancer, Alzheimer’s, Parkinson’s, epilepsy and other diseases.

The price controls in the Inflation Reduction Act would inhibit innovation and cut American lives short. Drug innovation is estimated by various academic studies to contribute 35% to 73% of the gain in U.S. life expectancy over the past 30 years. One of us (Mr. Philipson) has calculated that the bill’s price controls would slow R&D spending and the introduction of new life-saving drugs with a cost in lost years of life 30 times the toll from Covid-19 to date. Using conventional government measures of the dollar value of a human life, this could mean tens of trillions of dollars of economic losses—to say nothing of increased suffering of those with chronic diseases. And because drugs are one of the least expensive way to treat diseases, slowing drug development through price controls would likely raise healthcare costs over time.

Now consider the green-energy industry. Over the past 40 years more than $200 billion of taxpayer dollars have poured into green energy—mostly subsidies for wind and solar power through direct payments, loan guarantees and renewable energy mandates. The feds have been awful at picking winners—think Solyndra—and this bill would spend another $380 billion.

What have we received in return for all this money? Wind and solar account for less than 7% of America’s total energy production—and it’s an expensive 7% for the taxpayer. A University of Texas at Austin study found that subsidies per megawatt-hour of electricity amount to roughly 50 cents for coal, $1 to $2 for oil and natural gas, $15 to $57 for wind and $43 to $320 for solar.

The bill also proposes a corporate minimum tax because Democrats object to big companies’ paying zero taxes. The pharmaceutical industry over the past decade has paid tens of billions in taxes. Many wind and solar companies receive more in subsidies than they pay in taxes.

In short, Congress is about to make a near half-trillion-dollar bet on the wrong horse. The bill will make America poorer and less competitive, and it will cost lives.

Mr. Moore is a co-founder of the Committee to Unleash Prosperity and a senior fellow at the Heritage Foundation. Mr. Philipson served on President Trump’s Council of Economic Advisers and is a professor of public policy studies at the University of Chicago.

Source:, Stephen Moore and Tomas J. Philipson