Disenfranchisement of reflex seizures ending?

The new definition of epilepsy makes it clear that reflex seizures "count" as evidence of epilepsy. In previous definitions, this was not explicity stated.

The new definition of epilepsy makes it clear that reflex seizures “count” as evidence of epilepsy. In previous definitions, this was not explicity stated.

A new definition of epilepsy published this week affirms that photosensitive and other reflex seizures qualify as “real” epilepsy. This clarification may eventually help increase awareness of seizures from video games and other electronic media.

Although reflex seizures have long been included in official classification schemes of epileptic seizures, they don’t fit cleanly into established categories of seizure types and epilepsy syndromes. In neurology training they are typically mentioned only briefly. And typically they are taken too lightly by doctors using the prevailing diagnostic criteria for epilepsy: at least two unprovoked seizures at least 24 hours apart.     

Because reflex seizures, by definition, are provoked by specific triggers, there’s confusion and most doctors have been reluctant to diagnose epilepsy in people whose epileptic seizures require an environmental provocation.  The authors of the new definition paper acknowledge this:

Under limits of the current definition, [a] patient might have photosensitive epilepsy, yet not be considered to have epilepsy because the seizures are provoked by lights…People with reflex epilepsies previously have been disenfranchised by the requirement that seizures be unprovoked. The inclusion of reflex epilepsy syndromes in a practical clinical definition of epilepsy now brings these individuals into the epilepsy community.” 

Diagnostic criteria under the new definition now include at least two unprovoked or reflex seizures at least 24 hours apart. The new definition also allows an epilepsy diagnosis after a single seizure–either unprovoked or reflex–if there is a high probability of recurrence.

I’ve written previously about the inconsistency inherent in using the criterion of “unprovoked” to diagnose epilepsy in people whose seizures happen only in response to sensory triggers such as flashing light. This thinking (along with the assumption that photosensitive epilepsy is very rare) has led to marginalization of reflex seizures in the research community and among clinicians as well. Marginalization means doctors have been underdiagnosing reflex epilepsy, researchers seeking funding pursue other topics to study, and the public and public policy makers are largely unaware of the public health issue of photosensitive seizures.

The practical clinical definition was developed by a 19-member multinational task force of the International League Against Epilepsy (ILAE), incorporating input from hundreds of other clinicians, researchers, patients, and other interested parties. I’m more than pleased that the ILAE is choosing to make it clear that reflex epilepsy deserves the same respect as other forms of the disease (the new definition paper characterizes epilepsy as a disease rather than a disorder). It’s fortunate that the chair of the ILAE task force that produced the new definition is Robert Fisher, MD, PhD of Stanford, lead author of the 2005 consensus paper describing seizures from visual stimulation as “a serious public health problem.” No doubt Dr. Fisher’s appreciation of the magnitude of the problem was instrumental in ensuring that the task force addressed it.

Not all epileptologists agree with all aspects of the new epilepsy definition–and Epilepsia has given them a voice as well, publishing half a dozen commentaries, all of which are available free online. I contributed a piece as well, providing a patient/family perspective.

Of course, it remains to be seen how long it will take for neurologists to shift their attitudes and diagnostic practices regarding reflex epilepsy. Perhaps the inclusion of reflex seizures in the epilepsy definition will help dispell the idea that reflex seizures are rare.


“Problematic” gaming higher in autism, ADHD

Boy video Game autistic attention deficit hyperactivity disorderA study released today in the journal Pediatrics confirms what a lot of parents have already figured out: kids with autism spectrum disorders (ASD) and kids with ADHD spend much more time playing video games than typically developing peers and “may be at particularly high risk for significant problems related to video game play, including excessive and problematic video game use.”  Only boys participated in the study merely because both disorders are diagnosed more frequently in boys–there is no reason to expect the results would be any different if girls were included.

The study notes that in the general population, long-term. excessive video game use can have a variety of detrimental effects. “Although longitudinal research [collecting data on a group of subjects over an extended time] is needed to examine the outcomes of problematic video game use in these special populations…the current findings indicate a need for heightened awareness and assessment of problematic video game use in clinical care settings for children with ASD and ADHD.” Of course, many kids start playing video games before they are diagnosed with ASD or ADHD, so maybe the heightened awareness and assessment should extend to all kids?

Well, this is a first step, to compare, as this study did, behavioral characteristics and game usage of neurotypical kids against kids with ASD and ADHD. The problem with these studies is that all they can point to is associations between behaviors and game use in the three cohorts. No causality. There’s an association between attention problems and problematic video game use, which means the attention problems could already exist or could be the result of game use (or both, probably). The study calls for longitudinal studies (following the participants over a long period of time) “to examine the long-term effects of screen-based media use in children with ASD.”

Without waiting for the results of a longitudinal study, researchers could find out pretty quickly how the brain responds to video games in kids with ASD and ADHD and in neurotypical peers. Hook up all three groups to an EEG while they play, note the differences in the way their brains react. Track brain activity when they aren’t playing, and compare it to their activity in front of a game. This provides the opportunity to show causality. Despite the drawbacks of EEG, it’s the most practical tool for this type of study.

I’m willing to bet that the rate of seizures (especially the kind you can’t see) detected during playing is higher in the ASD and ADHD kids. The seizures and seizure-like abnormalities in brain waves have an immediate effect on cognitive function (including attention/focus)and behavior. Inability to focus is a very common post-seizure symptom, and it can last for a day or two after a seizure.  A child who plays video games often and who has this sort of neurological response to video games may therefore exhibit inability to pay attention and other behavioral difficulties all the time.

I’m still eager to have researchers take up the pilot study I proposed a few years ago that looks at the EEGs of ASD kids and neurotypical kids, both at rest and while playing video games. In the meantime, whether or not the studies are telling us something totally new, if they encourage parents to think more carefully about their children’s gaming habits and question possible links to behavior issues, that’s a good thing.


Bread and video games

What do a loaf of bread and an action video game have in common? Both are man-made and widely consumed, yet hugely underrecognized as potentially serious health hazards. There are a lot more parallels.

Sensitivity to gluten, the primary protein in wheat, and to the bright flash and rapidly moving patterns game of screens, are both considerably more pervasive than the medical community and the general public had realized. Awareness of gluten sensitivity has grown tremendously in the past decade, though, because a portion of the medical community broadened its understanding of a disorder once defined by very rigid diagnostic criteria.

Consider this comparison:

Progress on the gluten front

For decades the only type of gluten sensitivity recognized by doctors was celiac disease, a severe condition that often, but not always, manifests with gastrointestinal problems. The only diagnostic testing required an intestinal biopsy that–turns out–is easily falsely negative. After a negative biopsy, would be told that celiac disease had been ruled out, and that therefore it was OK to eat wheat and other grains containing gluten. In actuality many of these patients either had celiac–but a misleading biopsy that didn’t collect tissue samples from the affected area of the intestine–or they had a different form of gluten sensitivity that causes damage only to other body organs, rather than the intestine.

Because doctors were taught in medical school that celiac disease is very rare, occurring in only one in several thousand individuals, there seemed to be little reason to consider the diagnosis in patients, order a biopsy, or question a negative biopsy result. Some researchers suggest that ten percent or more of the American public has a sensitivity to gluten, in most cases with no obvious symptoms or symptoms that don’t suggest a food sensitivity. Even without obvious symptoms gluten intolerance can be a very serious disorder that affects daily functioning and quality of life.

Growing numbers of consumers without an official diagnosis of gluten sensitivity are being more proactive by experimenting on their own with a gluten-free diet as a healthier way to eat. Many notice a range of improvements in their well-being from this change. A rapidly expanding market of prepared gluten-free foods makes a gluten-free lifestyle less burdensome. An increasing number of restaurants offer gluten-free menus, and new gluten-free foods are a booming market for food retailers. Celiac and gluten-free support groups provide practical and moral support. In addition to peer-reviewed research, there are now a lot of books for consumers and online resources. Probably most consumers are learning about gluten sensitivity from these sources rather than their clinicians, and some are helping educate their doctors about it.

The photosensitive epilepsy front

Because doctors were taught in medical school that photosensitive epilepsy is very rare, occurring in only one in several thousand individuals, there has seemed to be little reason to consider the diagnosis in patients, order an EEG with photic stimulation, or question a negative or inconclusive EEG. There is no practical, reliable way to know how prevalent photosensitive epilepsy is in the general population. Even without obvious symptoms of a seizure, people who experience subtle seizures can experience impairments that affect daily functioning and quality of life.

Without an official diagnosis of photosensitivity, consumers can experiment with a screen-reduced or screen-free lifestyle–should they have an inkling that subtle seizure activity caused by screen exposure is affecting their health. However, at this time there are few products or supports to help them cut back on recreational screen time. A limited number of mental health providers offer therapy for Internet or video game addiction. Most focus on treating the addiction itself rather than on overcoming the physical and mental health consequences of exposure to potentially seizure-causing screens. Consumers are still essentially on their own to figure out the connection between video games and seizure activity, and there is little for them to read on the subject. Little research is being carried out in the US on photosensitivity and today’s electronic entertainment.

Perhaps there is reason to be encouraged by the progress in educating the public and clinicians about gluten-related health problems. In the face of similar obstacles to wider awareness and prevention, it should be possible for seizures induced by visually overstimulating electronic media to become better known, understood, and prevented. In the interim, a great deal of work lies ahead to empower consumers with the information they deserve about screen-induced seizures. Please help spread the word.


7 seizure triggers per hour from Spanish TV

Jaime Parra, MD, PhD, with poster describing the Spanish television study

Spanish TV viewers are exposed to potentially seizure-inducing visual sequences about seven times per hour, according to a study released this month at the 10th European Congress on Epileptology in London. The study was led by Jaime Parra, MD, PhD, an epilepsy specialist at Madrid’s Hospital La Zarzuela and Sanatorio Nuestra Señora del Rosario.

Dr. Parra and his team recorded 105 hours of broadcasts across seven channels, capturing four consecutive hours of morning programs on five consecutive days in January. A total of 738 instances were identified where viewers were exposed to visuals that did not meet the safety guidelines for visually induced seizures. The Harding Flash and Pattern Analyzer assessed flash rate, luminance (brightness), intensity of red images, and spatial patterns.

Of the 738 safety violations, 714 incidents involved bright flash. The study’s authors concluded that “Spanish broadcasters seem to be unaware of the risk of photosensitive epilepsy. National guidelines should be adopted to lower the risk of Spanish TV content triggering epileptic seizures in susceptible individuals.” The safest channel was dedicated to children’s programming. The investigators plan to bring their results to the attention of Spanish media and government officials as well as the Spanish public.

Results from the next stage of this project, which will involve analyzing the intensity of the visual stimuli that were recorded, will be presented at an upcoming meeting of the Spanish Neurological Society. The team also plans to assess television broadcasts in other European countries.

To read the poster summarizing the initial findings, click here.


A continuum of visual sensitivity

Even readings outside the red zone may indicate the need for caution.

If a neurologist tells you that you don’t need to worry about seizures from electronic screen exposure, because you’re not photosensitive, what does that really mean?

It means that when you were tested for your response to a white strobe light, an EEG didn’t detect a particular abnormal electrical pattern in your brain. (I’ve noted some limitations of this procedure elsewhere.) Epileptology looks for yes or no, typically relying on EEG to rule out epilepsy. If yes, possibly medicate; if no, it’s not a case the clinician will pursue.

It does not indicate that bright flashing and/or patterns from electronic screens don’t adversely affect your brain function.

Researchers have gradually come to consensus on exactly what the EEG must look like to indicate photosensitive epilepsy (the photoparoxysmal response): certain spike/wave patterns that appear in both brain hemispheres. In arriving at these criteria, researchers excluded three other types of EEG abnormalities that in prior research “qualified” as a photoparoxysmal response. Epilepsy researchers aren’t certain what the significance of these other abnormalities is, but because the other patterns cannot conclusively be associated with epileptic seizures, there’s little interest in further research.

So these other EEG abnormalities from photic stimulation don’t count, in current neurology practice, and nobody would even tell you about them if they were found in your EEG. You’d be told the EEG was normal, period. But what if these other abnormalities were a sign that neurological function is in fact disturbed by visual stimuli, but not to the point of a seizure?

Let’s say you had one of the three other EEG abnormalities (which you wouldn’t know about, because the EEG was deemed normal). Maybe these indicate that you’re vulnerable to symptoms of a visual-overload-not-to-the-point-of-seizures syndrome. Neurologists have been examining the overlap between epilepsy, photosensitive epilepsy, and migraines. More about this in a future post, but actually there are many overlapping symptoms and correct diagnosis can be difficult. So if video game exposure or photic stimulation produces headaches and visual disturbances, and an inconclusive EEG, it may be that the visual overload is triggering migraines. Or perhaps the exposure is triggering another form of hyperexcitability in the brain’s visual cortex, which has been termed visual stress. While research has been done on this, it’s not part of a conventional neurology practice.

What about patients with more subtle or mood-related symptoms of a visual-overload-not-to-the-point-of-seizures problem? Who is treating these patients? Could be psychiatrists and psychologists, who view altered behavior and cognitive function through the lens of their respective training. Because there’s such a dearth of research of the gray areas of brain dysfunction following exposure to electronic screens, mental health providers have no basis for treating these patients for anything but mental health disorders. It’s clear that more research is needed and that more effects on the brain will be uncovered. One intriguing paper explores the contribution of fluorescent lighting to agoraphobia. The SpongeBob study published last year showed diminished executive function in children who viewed the cartoon.

In her Psychology Today blog, psychiatrist Victoria Dunckley recently posted a compelling piece about the effects on her patients of electronic screen time. She recommends creating a diagnostic category called Electronic Screen Syndrome to identify a dysregulation of mood, attention, or arousal level due to overstimulation of the nervous system by electronic screen media. She has seen dramatic improvements in hundreds of patients’ mood, behavior, and cognition after they go on an “electronic fast.” (Some have underlying psychiatric diagnoses, some don’t.) Maybe these patients were having very subtle seizures from electronic screens. Maybe the effects on the nervous system weren’t quite what epileptology defines as seizures. Either way, many kids exposed to electronic screens are experiencing diminished quality of life (as are their families) for a problem that medicine has not yet acknowledged.


ADHD, video games, and seizures

I read an article this week about video games designed to treat ADHD. The concept sounds appealing:  use some time already spent on recreational video games to instead play therapeutic video games, and make ADHD treatment enjoyable enough that kids will stick with it. Another plus that developers point out is that treatment provided via games would not cause the side effects of ADHD medications. Games designed to improve some aspect of physical or mental health or performance are a fast-growing growing sector, and there’s even a scholarly research journal that launched this year, Games for Health Journal.

Video games are not without side effects, though, including seizures. ADHD, video games, and seizure vulnerability haven’t been studied together, but by piecing together some studies dealing with two of the three factors, the interconnectedness between them can be considered. So here is some information on ADHD and video games, and separately, information on ADHD and seizures. Put them together and think about about video games and ADHD being a risk factor for game-induced seizures. Developers of games to treat ADHD need to be conscious that the same neurological abnormalities that cause attention problems may also make people with ADHD more vulnerable to seizures from a video game.

ADHD and video games

Evidence is accumulating that exposure to typical (non-educational, non-therapeutic) video games is associated with later attention problems. It’s a highly charged subject, because scientists can never account for all possibilities and variables in a single study, and people tend to feel very strongly one way or the other about video games. A lot more study is needed because so little has been done that follows the same children over time. Based on findings including the following, the American Academy of Pediatrics issued cautions parents about video game use.

“…[A]mount of time spent playing video games is associated with greater attention problems…[B]oth television viewing and video game playing were uniquely associated with attention problems…[T]he total time spent with screen media (both television and video games) was positively related to attention problems.

…Exposure to screen media was associated with later attention problems even when earlier attention problems and gender were statistically controlled. This provides stronger evidence…that screen media may influence attention problems; controlling for earlier attention problems…rules out the possibility that the association between screen media use and attention problems is merely the result of children with attention problems being especially attracted to screen media.

…[T]elevision viewing and video game playing were associated with attention problems in both middle childhood and late adolescent/early adult samples…These similar associations across age groups raise an important possibility about the persistence of television or video game exposure effects on attention problems. Whatever the ages at which watching television or playing video games may increase attention problems, the consequences may be quite long lasting or cumulative.” 

–Edward Swing et al., “Television and Video Game Exposure and the Development of Attention Problems” in Pediatrics, August 2010

ADHD and seizures

While findings from one study were announced regarding the high rate of photosensitive epilepsy in autism, no studies have been published on photosensitive epilepsy in people with ADHD. What studies do show, however, is that in people with ADHD seizures of all types occur at a much higher rate than in the general population. The findings suggest that environmental influences, including video games, could place people with ADHD at higher risk for photosensitive seizures.

There is increasing evidence and acceptance of some underlying brain dysfunction shared by epilepsy and ADHD, and people with one disorder have more than the usual risk of having the other condition as well.

As one study puts it,

“It is likely that there is a common neurobiological predisposition for both a lower seizure threshold and ADHD behaviors that may involve both genetic and environmental factors… We found a 2.7 fold greater incidence of epilepsy among children with ADHD than in controls.”

— Shanlee Davis et al., “Epilepsy in Children With ADHD: A Population-Based Study” in Pediatric Neurology, May 2010

Another study found that children with the predominantly inattentive type of ADHD have a risk of developing seizures that’s 3.7 times the normal odds. The odds for children with the combined type of ADHD, which includes inattention and hyperactivity, are 3.3 times the normal rate.

“ADHD precedes the development of epilepsy, and ADHD or its determinants must be considered risk factors for epilepsy.”

–Dale Hesdorffer, et al., “ADHD as a Risk Factor for Incident Unprovoked Seizures and Epilepsy in Children” in Archives of General Psychiatry, July 2004***

This was specific to the inattentive type of ADHD, which is presumably the intended market for video games for helping with focus, memory, screening out distractions, etc.

ADHD + video games = higher likelihood of seizures 

I don’t know if games-for-health developers, particularly people working on ADHD treatment games, are more concerned about the seizure hazard than  developers of games for pure entertainment. Presumably a therapeutic application’s on-screen action would not be full of strobe effects. Without seeing the games, though, it’s hard to know for sure about the kinds of screens and effects that are used to congratulate users on their score, signal the end of the game, etc.

Let’s hope these games don’t do harm in their efforts to do good.

***Note that “incident unprovoked” in the study title refers to means a seizure that is not provoked by a medical situation unrelated to epilepsy: a head injury, fever, intoxication, and so on. A photosensitive seizure triggered by flash is not considered provoked, because that is the nature of reflex epilepsies, that they are triggered by a sensory experience. The terminology is more than just confusing. Because the words trigger and provoke are close to synonymous, the use of “unprovoked” in defining seizures typical of epilepsy seems to to exclude reflex seizures. The terminology both reflects and contributes to the relegation of reflex seizures to the sidelines of clinical training and research funding and and perpetuates the perception that they are rare.


Canaries, autism, and sensory overload

Like canaries testing air safety in a coal mine, people with autism are the first to be affected by hazards in our everyday environment.

“I believe that when the science is in, we will see that people with autism are ‘canaries in the coal mine,’ the most susceptible, who are affected first by problems that may eventually reach us all.”

–from The Autism Revolution by Martha Herbert, MD, PhD, with Karen Weintraub (Ballantine Books, 2012)

Martha Herbert reasons in her remarkable book that the rapidly increasing prevalence of autism indicates the disorder can’t possibly be due to genetics alone. She makes the case, based on findings in diverse fields of medical research and on her own clinical experience, that autism is not a genetic trait destined to be lifelong. Instead, she’s suggesting that the rise in autism is a consequence of the environment we live in, and that many autism symptoms can be reduced by making environmental changes. It’s compelling reading whether or not someone you love has autism, because, Herbert contends, many of the environmental influences that probably contribute to autism will likely affect all of us in time.

While the development of autism may begin with genetic vulnerability, she argues, the emergence of the disorder begins after a tipping point is reached following a multitude of modern-day environmental exposures. The cumulative effects of these environmental stresses influence the expression of genes associated with autism, leading to a cluster of brain and body dysfunctions typical of this spectrum disorder. Autism rates are sharply rising because the biological systems of growing numbers of young people are running out of the resilience required amid burgeoning environmental challenges.

Sensory overload as environmental stressor 

Dr. Herbert explores environmental influences including toxins, emotional stress, infection, diet, and sensory overload. She cites many cases where people with autism got a lot better when specific changes in these environmental factors were made, thereby reducing assorted stresses on the brain and body. Eliminating the right stressors, which may require considerable trial and error, can allow some children to become significantly higher-functioning, healthier individuals.

city-night-explosion-fireworkIn any individual, whether or not autism is present, identifying and avoiding environmental seizure triggers can produce big improvements in a range of physical, cognitive, and emotional difficulties associated with seizure activity. Dr. Herbert suggests that seizures, which are not uncommon in people with autism, can cause or exacerbate some problem behaviors in this population.

The only study done to date on autism and photosensitivity indicates children on the autism spectrum have much higher rates of photosensitive epilepsy. Given the high rate of other types of epilepsy in those with autism, this is not surprising. To be quite clear, I’m not suggesting that video games cause autism, nor does Dr. Herbert. But preventing seizures that exacerbate autism symptoms can be a major stepping-stone to wellness.

Dr. Herbert outlines many steps parents can take, beyond seizure reduction, to limit exposure to things that can magnify autism symptoms and may contribute to its emergence. While not every approach works for every child with autism, she provides a range of additional strategies such as eliminating gluten, dairy, and food additives, regulating sleep, getting rid of toxic household chemicals, and reducing sensory overload.

“Too much sensory stimulation, trouble being coordinated, not enough sleep, seizures, not being able to say what you want—all can contribute to frustration and stress. Looking for solutions at each of these levels can help reduce the stress and increase the time spent truly learning and enjoying life.”

“Gray zone” electrical activity

Dr. Herbert does not assume that a finding of “no seizures” on an EEG means that visual stimuli are not affecting the brain’s normal electrical firing. The consequences of brain waves that are “somewhere between ‘normal’ and ‘disease,'” she contends, could be “subtle but still important”–even if no actual seizures are triggered. In other words, even mildly abnormal rhythms in the brain, which can be provoked in some individuals by exposure to visual overstimulation, may result in impaired neurological functioning. Even if your child has not been experiencing actual seizures, Dr. Herbert says these abnormal rhythms due to excessive sensory stimulation from visual media may actually affect the brain’s ability to process information.

“…A lot of kids with autism might be having ‘gray zone’ electrical problems—too mild to meet the formal definition of seizures, but enough to interfere with their quality of life.”

These “gray zone electrical problems” are not limited to those with autism. Other populations likely to be in this gray zone include people with learning disorders, intellectual disability, or psychiatric conditions—the more vulnerable among us. In other words, it may not make sense to dismiss as irrelevant the EEG abnormalities that don’t clearly indicate seizures.

Reducing overload

If your child is on the autism spectrum, you probably already know to reduce your child’s sensory overload. One way to do that is to limit screen time and avoid overstimulating content. Try eliminating video games for a few days and see if your child begins to feel better and struggle less with learning, attention, emotions, and behavior. (Your child may be initially quite resistant to this experiment, which will temporarily make things more stressful. To get a fair reading on the effect, you need a few days free of any withdrawal symptoms.) During this video-game-free time all visually overstimulating media should be avoided, including fast-paced cartoons, movies, and music videos.

Those whose children aren’t on the autism spectrum should also take note. By applying the canary-in-the-coal-mine model, we may yet learn that visual overstimulation can profoundly affect the functioning and health of many people, including those without autism. When the visual system of anyone with hidden photosensitivity is no longer overloaded by daily video games, lives can be transformed.

Could anyone in your family be affected? It’s something to think about.