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.

 


Toddlers with iPads

Darren Murtha Design’s Shape Builder was one of five iPad apps recommended to parents in a New York Times column.

A piece last week in the Wall Street Journal questioned whether there might be effects on brain development when really young kids play with iPads and similar devices. The answer is simply:  nobody knows. The article points out that

…In many ways, the average toddler using an iPad is a guinea pig. While the iPad went on sale two years ago, rigorous, scientific studies of how such a device affects the development of young children typically take three to five years.” 

and it quotes a couple of experts:

“‘There is ‘little research on the impact of technology like this on kids,’ says Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Hospital….”

 “’Unfortunately a lot of the real-life experimentation is going to be done by parents who now have young kids,’ says Glenda Revelle, associate professor of human development and family sciences at the University of Arkansas.”

The article was written by Ben Worthen, a father who was concerned about the trance-like state he and his wife observed in their 4-year-old son playing with an iPad. Worthen notes that it soon became a battle every night when his son was asked to turn off the iPad.

“’It gives him a dopamine squirt,’” says Michael Rich, director of the Center on Media and Child Health at Children’s Hospital in Boston, referring to the brain chemical often associated with pleasure. Many apps for kids are designed to stimulate dopamine releases—hence encouraging a child to keep playing—by offering rewards or exciting visuals at unpredictable times.”

Some people say that after all the dopamine rewards from video games, it’s not as easy to pay attention to activities that don’t deliver regular bursts of dopamine. And while many parents are pleased with the way educational apps appear to help with early learning, they also speak of their kids’ immersion for hours at a time. When I think of toddlers, it’s hard to come up with any other activities that hold their attention for that length of time. Maybe the toddler brain isn’t designed to focus for so long on one thing at a time when they’re exploring the world around them?

A few small studies have shown gains in vocabulary in young kids who used educational apps. Some researchers think the iPad may not have the same neurological effects as video games and TV, which the American Academy of Pediatrics has cautioned can be harmful in very young children, whose brain development is at a critical stage in their first few years. But the technology is so new, there aren’t any such studies yet.

We don’t really know what effect major doses of screen time has on older kids, either, or on adults. Kids growing up today with so much fast-paced visual technology from such an early age may display differences in brain development in ways we haven’t uncovered yet. The issue is much broader and more complex than whether or not these young brains are experiencing seizures brought on by video action. There could well be subtle changes in brain function that wouldn’t register as seizures but that affect processing nonetheless. More on that in my next post.

In the meantime I encourage you to check out the article that started off the discussion, with accompanying video and audio reports.


Kanye West loves strobe lights

The Harding Flash and Pattern Analyzer shows flash levels in “Lost in the World” fail seizure safety guidelines by a wide margin. At upper left is a screen grab from the new video.

“Kanye West loves strobe lights,” cooed the Huffington Post the other day, reporting the release of the performer’s most recent flash-filled music video. “…the Chicago rapper…seemingly earns an epilepsy warning with every new project. His new video for the not-so-new song ‘Lost in the World’ certainly doesn’t deviate from the pattern.”

Apparently he loves strobe lights so much that–despite being informed, two music video releases ago–that his flashing visuals provoke seizures in some viewers, he is determined to use these effects anyway. Wow, you have to really respect a man who refuses to let the health of the viewing public get in the way of his artistic freedom. The Huff Post article continues in the same admiring tone: “…the rapper is known for his emphasis on quality videos (his half-hour ‘Runaway’ short film was perhaps the biggest statement of the rapper’s visual aesthetic).”

The rapper’s acknowledgement of a potential seizure problem has followed a strange path. In February 2011, accounts of seizures triggered by West’s “All of the Lights” video spurred UK-based Epilepsy Action to request that the video be removed from YouTube. In response, the video was temporarily removed and a warning was placed at the beginning:

This video has been identified by Epilepsy Action to potentially trigger seizures for people with photosensitive epilepsy. Viewer discretion is advised.

A year later the “N—-s in Paris” video was released with this same warning, although Epilepsy Action was never contacted about it.

And now there’s a warning at the beginning of the “Lost in the World” video that doesn’t even explain why the warning is important for viewers. All it says is:

Warning:  Strobe effects are used in this video.

I expect Epilepsy Action will probably make a statement regarding the risks of viewing this latest release, and perhaps take issue with the less-than-explicit warning that was provided. How about some advocacy in the US? It’s time to confront the very preventable public health problem created by strobe effects in entertainment media.


Teaching about photosensitive and “regular” epilepsy together: 1+1=3

Click image for 4/12/2012 editorial at epilepsy.com on including photosensitivity in epilepsy awareness campaigns.

The American epilepsy community makes information available on photosensitive seizures but in general doesn’t go out of its way to advocate for protecting consumers from visual media that can provoke seizures. Our epilepsy community doesn’t want to want to call too much attention to the risk of seizures from brightly flashing, visually overstimulating products and experiences. The priorities for public education and advocacy don’t include teaching the public about why video games contain those warnings.

But everybody wins–the “mainstream” epilepsy population, those with exclusively photosensitive seizures, and members of the public with a need to know–when epilepsy public education campaigns raise awareness of both types of epilepsy, in the context of the other.

Epilepsy doesn’t deserve its stigma and the notion that it’s an affliction exclusively of the seriously disabled. Raising awareness of epilepsy as a spectrum of seizure disorders that includes visually triggered seizures in otherwise healthy individuals could help engage the public and change misperceptions. And, much-needed photosensitivity education and advocacy can be most effectively delivered by established, well respected epilepsy organizations, as part of an overall public education program.

Here’s how I envision this:

  • Part of photosensitivity education is making people aware they could already be having visually induced seizures they have never identified. People who learn about subtle, undetected seizures experienced with or without a visual trigger can seek medical assessment and treatment. People with undetected photosensitive seizures might come to understand the source of  their unexplained symptoms during or shortly after being exposed to video games, TV, music videos, and other visual media.
  • Those with no history of seizures and no idea they might be photosensitive would realize they should be mindful of unusual sensations and actions while exposed to lots of flash and pattern motion. Parents would be more vigilant about observing their children who are engaged in screen-based activities, and about asking them about possible symptoms of subtle seizures.
  • Doctors would routinely inquire about patients’ exposure to visual media and about any unusual aftereffects, and they would recognize from patient histories when suspicion of photosensitivity is warranted.
  • People who learn they have photosensitive epilepsy would know how to protect themselves and their families from triggering stimuli–through avoidance, the use of dark glasses, and limiting problem images to a small portion of the viewing field.
  • The isolation and stigma endured by those with “regular” epilepsy will ease when people learn that seizures are a common disorder. The general public will understand that seizures are experienced by a broad spectrum of individuals, some who have other disabilities as well, and many who don’t. Some have seizures provoked by visual triggers, and others have seizures due to other, often unknown, triggers.
  • On the strength of the advocacy of  well-established epilepsy organizations, public health policy makers will become aware of the need for greater consumer protections, such as those in the UK, that require or encourage games, TV, online content, and movies to meet international guidelines for seizure-safe visual media. None of this is even under discussion in the US.

I’ve considered things from both the typical epilepsy and the exclusively-photosensitive-seizures perspectives. After discovering my daughter’s photosensitivity, we saw dramatic gains in her health and functioning after she gave up video games, her main visual trigger. But her wellness didn’t last and she went on to develop “regular” epilepsy. Daily life today is affected by unpredictable seizures and by the need to always be vigilant for visual triggers in the environment. I believe people with mainstream epilepsy–and the general public–have a tendency to assume that reflex seizures are simple to prevent and therefore the disorder is less burdensome than spontaneous seizures.

I wrote an editorial proposing that photosensitivity play a central role in a new type of awareness campaign about epilepsy. You can read “A Different Public Education Campaign” in this week’s epilepsy.com Spotlight newsletter, where I’m addressing the mainstream epilepsy community, and making the case for bringing photosensitivity under the epilepsy awareness umbrella, as it were.


Life with Zeiss Z1 F133 protective lenses

The Zeiss F133 lenses are a deep cobalt blue. They filter out a lot of light, and block out the color red, the most seizure-provoking color.

I promised to share information about my daughter’s experience with the blue Zeiss Z1 F133 lenses that I’ve written about previously. In the past we got prescription glasses made with these lenses. But her prescription has changed every year and that meant ordering them all over again. So this last time we got her a new pair, we went with clip-ons. Here’s what I can tell you:

They absolutely do prevent seizures while Alice watches TV! They also prevent the seizures that happen when she reads uninterrupted for very long periods. And they’re handy for unexpected events out in the community—emergency lights, flash photography, and flickering fluorescent bulbs.

  • Alice can feel that her eyes are under less stress as soon as she puts the glasses on. I guess it’s similar to feeling less uncomfortable when putting on regular sunglasses in bright sunlight.
  • No hard data, but we suspect that even with the lenses, there is still some effect on her brain that sneaks through. We can’t say for sure, but we have a hunch that she has more unprovoked seizures in the day or days after watching TV. So we currently limit TV to a couple of half-hour sessions per day.
  • I can’t report on the lenses’ effectiveness for preventing seizures from video games because we aren’t going there. Alice cannot be around video games, period, because she very quickly becomes intensely addicted. If left unsupervised with a computer, she will find a game site. If left alone to play video games with blue glasses on, she invariably removes the glasses when no one is around. There is something about that pre-seizure trance that her brain finds irresistible, even though her mind knows she’ll regret bringing on a seizure.
  • The world looks kind of eerie all in the dim blue light that gets through the lenses. You can’t really discern color very well except for yellow, blue, and green.
  • As expected, clip-ons are hard to keep track of when they’re not attached. (This is especially true for people with the attention and memory issues that often are associated with seizures).  I just ordered another pair!
  • If you get prescription glasses made from the Zeiss lenses, you’ll be switching off with your non-tinted regular prescription glasses–one pair on top of your head or hanging around your neck or at large and at risk of getting lost.

About the lenses

Z1 is the name of a filtering lens, made by Zeiss in Germany, that blocks out 80 percent of light. (I’ve previously said they are cross-polarized, which is incorrect.) These are the lenses used in the Capovilla studies. F133 refers to the particular shade of blue that was found in clinical tests to be most effective for photosensitive patients. Zeiss does the tinting. It’s a lens that was already commercially available in Italy, where the study was done. Researchers have looked at some other lenses as well, and I hope to learn more about those and pass along what I find out. Given how effective the Zeiss lenses are, though, there hasn’t been a lot of other investigation.

Like everything else having to do with seizures, what works for one person may not help another. Before investing in these you might want to just try polarized sunglasses to see how helpful those are. For some people that may be good enough protection.

How to obtain/order F133 lenses ***

In the past we were able to order them via Canada, but last year our optician said the Canadian supplier he was using couldn’t provide these lenses anymore. Through this blog I became aware of Antonio Bernabei, an optician in Rome who sells these. Contact him via email at info@otticabernabei.com. He responds quickly, and his email English is quite good. You can order these lenses from him in any of several ways:

If you don’t wear prescription glasses, order blank F133 lenses and pick out a pair of eyeglass frames from an optician who will fit them for you. The optician can cut and insert the non-prescription F133 lenses when they arrive.

Cost for blank F133 lenses (like the two round lenses above):

  • Plain lenses, for clip-ons: 99 Euros (as of this writing, approx. $130) plus shipping and insurance.
  • Fee to cut blank lenses to fit into (most) sunglasses frames that you send: 20 Euros (as of this writing, approx. $26).

If you wear prescription eyeglasses and want a pair of prescription glasses made with the Zeiss lenses:

Send Antonio your eye doctor’s prescription and a pair of frames. Antonio will make tinted prescription glasses for you. Wear them as needed as you would wear any prescription sunglasses.

OR

Send him your prescription and provide the designer name, color, and model number of a pair of frames you’ve chosen from your optician, and purchase the frames and lenses together from Antonio. He’ll send the assembled glasses, and this way you don’t need to ship him the frames first.

Cost:  Varies according to the prescription, whether you need bifocals, etc.

If you  want to wear the Zeiss lenses as a clip-on for your prescription glasses:

These clip-ons attach magnetically to your eyeglasses at the top. Tiny screws visible on the lower half of the frame allow standard shades to be replaced with the Zeiss lens.

Order blank F133 lenses that your local optician can insert into a clip-on frame that attaches magnetically or hooks on to to your prescription glasses. Note that because Z1 F133 lenses are 2mm thick, most clip-on sunglasses frames cannot accommodate them. Typical custom clip-ons that match your eyeglass frame are made with a thin plastic lens that can’t be replaced without breaking either the lens or the frame. Ask your optician about clip-ons that have a tiny screw that allows the Zeiss lens to be inserted. We ended up buying an EasyTwist frame for the prescription glasses, which comes with a matching magnetic clip-on like the dark green one shown above.

Cost: see costs for non-prescription, blank lenses above

Antonio Bernabei
Ottica Bernabei
Via Del Corso, 4
Rome
Italy
Phone:  +39 06.3610190
www.otticabernabei.it 
 
info@otticabernabei.com

Our optician replaced the standard green shade with the F133. The next time Alice needs new prescription lenses, we can still use the same clip-ons.

Please send in comments to share your experience! I’ve learned a lot from some of you (especially L.H.) who also have been tracking these down. Have you been able to order the lenses from an optician closer to where you live? How well do the lenses work?

Additional sources

There are 2 sources I’ve recently heard about in North America. I believe they both have contacts with Canadian Zeiss representatives. Both optometrists can order the lenses and mail them to you.

Richard L. Silver, O.D.
Professional VisionCare Associates
14607 Ventura Blvd.
Sherman Oaks, CA, USA 91403
Office: (818) 789-3311
Fax: (818) 789-1047

drsilver@provisioncare.com

Dr. Silver charges $400 for a pair of lenses, either blank or corrective. Thanks to L.L. for locating him and sharing contact information

Norm Johnson, manager
Optometrists’ Clinic Inc.
12318 Jasper Ave.
Edmonton, Alberta
Canada T5N 3K5
Phone: 800-661-9976

njohnson@optometristsclinic.com

The clinic provides the lenses for $250 (March 2012 price). You can order them as uncut lenses or, with a prescription and frame (or frame information), make up a pair of prescription glasses. In December 2013 Larra H. reports that you can also order them in a fit-over, standalone frame that covers the field of view more thoroughly. Cost for the Zeiss lenses has apparently dropped, so the plain Zeiss lenses in a fit-over frame is now down to $165. 

*** January 7, 2020–A reader alerted me to the effectiveness of MigraLens glasses that are designed/marketed to prevent migraine. Because migraine and epilepsy are related conditions, this makes sense. The flash and glare that provoke photosensitive seizures can also provoke migraine. According to the MigraLens site, migraine can be triggered by red or blue light. One online customer review of these glasses said they were not helpful for computer/video games. 

*** May 5, 2012–After posting this, I found out about another way to get blue lenses that work just fine. You can work with your local optician and a blue tint they can use. See https://videogameseizures.wordpress.com/2012/04/27/seizure-protection-in-a-bottle/


Extra video game usage worsens existing attention problems in impulsive kids

A new study is the first to show that kids with attention deficits play more video games, which worsens the attention problems they were born with. Unfortunately, they are especially strongly drawn to the stimulation of games that end up pulling them into a downward spiral of more screen time and then even greater disruption of neurological function. Previous studies have shown that screen time increases attention problems, but this is the first that shows that those who start with attention problems are more likely to be exposed to screen time that compounds their neurological vulnerability.

“Children with greater impulsiveness and attention problems spend more time playing video games, which in turn increases subsequent attention problems and impulsiveness.”

— From Douglas A. Gentile et al.’s “Video Game Playing, Attention Problems, and Impulsiveness:  Evidence of Bidirectional Causality” in Psychology of Popular Media Culture, January 2012 (Vol. 1 No. 1.)

ADHD develops in children not merely as a consequence of genetic make-up. Environment can be an influence on its expression and severity, too. The study authors note that not enough research has been done on environmental factors that influence attention and impulse control.

“For the past 30 years, most of the research on attention problems has focused on biological and genetic factors rather than on environmental factors. This allowed for rapid advances in drug therapies, but has also caused many researchers and members of the general public to assume that impulsivity and attention problems were not modifiable by experience. This is unfortunate, as it means we have only focused on part of the solution. Furthermore, many problems with genetic bases are clearly enhanced by environmental triggers. By understanding some of the environmental influences, we can develop more effective solutions for children and parents. More research is clearly needed on the environmental factors, especially factors that are easily modified by parents, such as screen time.”

This study mentions four possible explanations for the association of electronic media and greater attention problems, an association that has been shown in other studies.

  • Children accustomed to the greater excitement level of playing video games may have more trouble focusing on much less stimulating tasks, such as school work or chores.
  • Time spent with video games displaces time that might have been spent developing greater impulse control.
  • Kids with poorer self-control may find it harder to resist the pull of exciting screen time.
  • As-yet unidentified factors that may be hidden within the data already assessed

I’ve got a fifth explanation: Could it be that kids with attention problems are more likely to have visually induced seizures from video games? And that the seizures, which leave behind cognitive impairments, create additional deficits in attention? Individuals with ADHD develop epilepsy at a rate that is 2.5 higher than the general population. About 20 percent of individuals with epilepsy have ADHD, whereas about 4 – 8 percent of the general population do. This higher prevalence in both directions suggests some common neurological weaknesses and/or processes.

Nobody has ever studied the sensitivity of kids with ADHD to seizures from video games. Just as kids on the autism spectrum deserve a study on their vulnerability to video game seizures, so do kids with ADHD. Some real data would allow parents of these kids to be more vigilant about video game exposure and to be watching more carefully for possible after-effects of gaming.

Gentile and colleagues noted that one predictor of increased attention problems, in addition to the total amount of screen time, was video game violence. They speculate that this might support the theory of screen time displacing time that could be spent learning impulse control. Because these are psychology (not medical) researchers, and because they want to get away from the biological model, they don’t raise the issue of neurological overload and/or seizures as a possible cause of declining attention capacity. But thinking about it in terms of the neurological impact on a kid with ADHD is certainly consistent with the influence of screen violence on attention. Violent games are apt to involve higher levels of visual stimulation, with the flashes of explosions, crashes, and assorted dismemberment scenarios.

What do you think?


Would you know if you just had a seizure?

No, not necessarily. You might have no idea it happened, even. Multiple studies have shown that people often aren’t aware of their own seizures. When you consider that altered consciousness is characteristic of many seizures, it’s not so surprising. People who aren’t “all there” during the seizure may have no memory of it.

And if you have a seizure with subtle symptoms, anyone who’s with you may not realize it’s happening, either. This is a key reason many people haven’t heard much about video game seizures–many just go undetected.

The big seizures, of course, get noticed. Anyone nearby can clearly see a person who has fallen and is having convulsions. Individuals emerging from a grand mal seizure (what doctors now refer to as a tonic-clonic seizure) won’t remember the event itself, but will realize they’re not where they were before (perhaps finding themselves on the floor or in an ambulance), and may have bruises from uncontrolled movements.

Although studies show that photosensitive epilepsy can cause any type of seizure, a lot of clinicians still assume the condition produces only grand mal/tonic-clonic seizures. They may not know that partial and absence seizures are associated with photosensitivity, too. Click here for a list of some typical signs you may have had a seizure.

What are partial and absence seizures?

Partial and absence seizures can act like stealth attacks on the brain. They cause unusual behaviors and sensations, and may be followed by additional symptoms, but they often escape notice while the seizure is in progress.

Simple partial seizures produce temporary symptoms such as distorted vision or unexpected movement or tingling in one limb. Because they affect a small area of the brain, awareness and memory are not affected.

Complex partial seizures occur in 35 percent of people with seizures. Many types of behavior can take place during the seizure, depending on which parts of the brain are affected. Sometimes people may seem to continue whatever they had been doing, including talking with others. Sometimes during one of these events people are conscious enough to allow them to hear what’s going on around them–perhaps feeling everything  is happening far away–but they aren’t able to speak. Because consciousness is altered, it’s not uncommon to have either no memory of what happened during the seizure or just a vague idea. The event can be over in 30 seconds, or it may last for a few minutes.

The seizures are typically followed by headache, temporary confusion, memory loss, and/or other neurological dysfunction, as well as fatigue and “brain fog” that gradually dissipate over a period lasting up to a few days. Lingering after-effects of complex partials can easily be more of a disruption to everyday life than the seizures themselves.

Absence seizures, where a person briefly stares and “zones out,” may be very hard to notice and can be mistaken for attention problems. Learning, memory, and social interaction are often affected by the gaps resulting from interruptions in awareness, but absence seizures are not followed by after-effects.

Research shows people often don’t detect their own seizures 

In a study published in 2007 by Christian Hoppe and colleagues, 91 seizure patients were asked to record all of their seizures in a diary during the time they were being monitored on EEG. In instances where patients activated a reporting alarm just prior to or during a seizure, only two-thirds of the seizures were documented afterwards by the patients. The reliability of patient reporting was lowest when documenting complex partial seizures and seizures experienced during sleep. Of 150 complex partial seizures (verified on EEG) while subjects were awake, only 52.7 percent of the events were reported, even though subjects were periodically reminded to report all their seizures.

The study authors state, “Seizure-induced seizure unawareness is a frequent, but rather unrecognized, postictal [post-seizure] symptom particularly associated with seizures from sleeping and with CPS [complex partial seizures].”  Now consider, what are the chances that a person who has never had a seizure before, or whose seizures have never been identified, will remember after the event that something unusual happened?

In the 2004 review article “Visual Stimuli in Daily Life,” Kasteleijn-Nolst Trenité and colleagues note that during photic stimulation testing many patients do not notice brief seizures that are detected on the EEG but have no clinical signs. “The question must be raised,” they continue, “whether asymptomatic individuals might have unnoticed reflex seizures triggered by daily-life stimuli and become overtly symptomatic only when a critical age is reached (early adolescence), in combination with lifestyle-related factors.” In other words, after adolescence, photosensitive seizures that were already happening but nobody was aware of may become more visible, possibly when the nervous system is affected by additional circumstances (lack of sleep, alcohol consumption, etc.).

Need more data? In a 1996 study of 27 seizure patients by Blum and colleagues, patients were not aware of 61 percent of their seizures detected on EEG! Seven patients didn’t recall any of their seizures. Patients were questioned periodically throughout the day as to whether they’d had a seizure or if anything unusual had occurred, so the seizures would be expected to be fresh in their minds.

Can an EEG help determine whether you had a seizure? 

Let’s say something suddenly felt very weird yesterday, and you’re wondering if it was a seizure. An EEG conducted today can’t tell you if yesterday’s event was a seizure. That’s because EEGs can’t provide data on any period other than the time the electrodes are in place and recording brain activity. An initial EEG usually lasts for 20 to 30 minutes and can be thought of as an extended “snapshot” of brain wave patterns. If you have a seizure during an EEG, the EEG can confirm that it was a seizure–but only if electrodes pick up the brain waves that typically signify a seizure.

Usually at some point during the EEG you’re exposed to a strobe light to see if your brain has an abnormal response to flash. If that part of the EEG is abnormal, it can indicate that you have photosensitive epilepsy and should avoid flashing lights. The test is done in a way that doesn’t provoke an actual seizure, but it can show an abnormal “firing” of neurons that is consistent with seizures. Note that strobe lights may not create that EEG response even if a video game does–the flashing white light doesn’t make the same impact on the visual cortex that a colorful screen with lots of action. Some people don’t respond to the strobe but do have an abnormal EEG response to certain sharply defined patterns. Video games and TV may include some of these patterns, but little testing is done for pattern sensitivity in the US.

EEGs done with scalp electrodes miss a lot of seizure activity that involves a small area and/or lies deep inside the brain, far from electrodes on the surface. I’ve written about this before, but I can’t resist adding that this point was acknowledged in the above study by Blum et al. “…there are seizure types that often do not manifest on surface EEG. The most important of these is frontal lobe epilepsy, but this also occurs with complex partial seizures of temporal lobe origin.”

In fact, “it is crucial to recognize that a normal EEG does not exclude epilepsy, as around 10% of patients with epilepsy never show epileptiform discharges,” according to a 2005 paper in the Journal of Neurology, Neurosurgury & Psychiatry.

Seizures are more common and frequent than current technology and human memory can demonstrate.


Are games the trigger or the cause of seizures? Does it matter which?


Photo by Ron Marshall. Some rights reserved. http://www.flickr.com/photos/ronmarshall/

Online forums open to all comers have a way of passing along bad information. For example, in response to a question about whether video games can cause tremors and muscle spasms that could be seizures, the following was recently posted:

“Computer games don’t cause seizures; they simply contain triggers that people with the condition photosensitive epilepsy (seizures that occur more frequently in reaction to certain patterns of light flashes) who already have epilepsy which [sic] causes them to have seizures. You cannot “get” seizures from playing video games…”

The responder is so intent on deflecting liability for seizures away from video games that a meaningless exercise in semantics is being played about whether the games cause seizures. C’mon. The question was whether the gamer could be having seizures due to video games. The answer is a definite yes. This was not a question along the lines of “Do cigarettes cause cancer?” Distinguishing between seizure triggers and their intrinsic causes fails to answer the question properly.

This poster’s response may have been influenced by a 30-second video about video game seizures, made by an internal medicine specialist who’s made clips about a variety of medical issues. Answering the question of whether playing video games can cause seizures, the doctor, Lisa Bernstein, MD, uses this same approach of making an unnecessary distinction between trigger and cause, saying:

“Video games cannot cause seizures. What we do know, however, is that people who are particularly prone to seizures, who have something called photosensitive epilepsy, have their seizures brought on by flickering or flashing lights often found in video games. So only these particular patients are at risk for having seizures with video game. Everyone else should be fairly safe playing them.”

Let’s examine Dr. Bernstein’s statements. We already know there’s a problem with the first sentence. But there are other problems as well:

  • Suggesting that nobody except those with photosensitive epilepsy needs to worry about video game seizures encourages a false sense of security. It presumes that anyone who is photosensitive already is aware he/she has the condition. Photosensitive seizures commonly occur in people who have never had a seizure before. These people are unlikely to have been tested for photosensitivity and are therefore completely unaware they’ve inherited this condition. When hundreds of Japanese children had seizures in 1997 during a Pokemon cartoon broadcast, only one fourth had ever had a seizure previously.
  • The prevalence of photosensitivity peaks in adolescence. Thus someone who’s played games for years as a child, while the inherited photosensitivity trait is still hidden, has no expectation that the condition is present and merely dormant. The trait is apparently activated by hormonal changes in adolescence.  From that point on it will declare itself only in the presence of certain visual triggers, and sometimes, only under certain circumstances such as sleep deprivation or alcohol consumption. A history of no visually induced seizures is no guarantee of a future free of them.
  • Her answer suggests that photosensitive seizures happen only to people who are “particularly prone to seizures.” A person whose seizures are triggered exclusively by specific visual stimuli is not necessarily particularly prone to seizures. For comparison, consider nonphotosensitive individuals with epilepsy who may have many seizures every day with no known trigger.

In August I emailed my concerns about the clip to Dr. Bernstein and VideoMD.com, the site that hosts health-related videos uploaded directly by Dr. Bernstein and other physicians. Although I didn’t hear back directly, I can no longer find this clip at www.videomd.com. However, the video has been picked up by other sites and lives on.