What do a pineapple playing tennis and a grape going for a ride have in common? Two things: 1) They’re currently appearing in Google’s Olympics-themed iOS and Android Doodle Fruit Games app, and 2) viewing them in Google’s video promoting the app could give you a seizure.
For the next two weeks while the game app is available, Google is promoting it with a zippy, fast-paced trailer. Visitors watching the trailer see rapidly moving images images that could provoke seizures in anyone with a condition known as photosensitive epilepsy. I tested the trailer for its risk of inducing seizures and found two segments–involving the aforementioned pineapple and grape–with a flashing effect that could trigger photosensitive seizures. From what I can tell, the problem images appear only in the trailer and not in the games app itself–unless they appear only after players achieve a high score that I didn’t reach.
What is photosensitive epilepsy?
Photosensitive epilepsy is more common than is generally known, and researchers agree it is probably underestimated. People with the condition have epileptic seizures triggered by lights or images that flash faster than three times per second.
It gained some notoriety after a Pokémon cartoon shown on Japanese TV in 1997 sent nearly 600 children to emergency rooms with seizure symptoms. The condition had already been extensively studied and researchers had drawn up guidelines for reducing the seizure risk from video images, but at the time Japan did not protect TV viewers from problem images.
Who is affected by photosensitive epilepsy?
The vast majority of those with “regular” epilepsy are not affected by visual stimuli. But photosensitive epilepsy may be harder to detect and is underrecognized by the public and by doctors. You may be susceptible to photosensitive seizures and not even realize it since:
- Photosensitive epilepsy typically doesn’t develop until adolescence.
- It can occur in people with no history of seizures. Of Japanese children affected by the Pokémon cartoon, 76 percent had never before experienced a seizure.
- People with other forms of epilepsy are routinely tested for photosensitive epilepsy, but the condition may be most common in individuals who don’t have any other type of seizures. These people are very unlikely to be screened for it.
You can already be experiencing seizures and not know it.
- Not all seizures involve complete loss of consciousness, falling, or body movement observable by others. Such major events, known as generalized seizures, occurred in less than half of the Pokémon-affected children.
- Because consciousness is altered at the time, a person having a seizure often has no memory of it.
Even if you have no visible symptoms of a seizure, there can be lingering after-effects that include fatigue, sleep, learning, and memory problems, mood irregularities, among others.
How the media and entertainment industry can reduce seizure risk
More than 20 years ago, researchers studying photosensitive epilepsy defined the factors, in particular the flash frequency, that are most likely to provoke visually induced seizures.The UK has required all TV content to conform to seizure-reduction guidelines since 1994, and Japan enacted similar regulations following the Pokémon incident. To date, no other countries have done this, but a United Nations-affiliated agency did adopt recommendations for reducing photosensitive seizure provocation from television. Meanwhile, of course, interactive media have become a much bigger part of our lives than television, and the same guidelines for reducing seizures from TV should be adapted to the internet.
The World Wide Web Consortium (WC3), the international group that produces website accessibility standards for all types of applications, now includes guidelines for reducing the risk of visually triggered seizures. But incorporating such standards into private industry applications and sites is a hugely complex and time-consuming process.
The United States Department of Justice has been considering since 2010 the complexities of creating regulations ensuring access by the disabled to public and private websites. The DOJ announced this spring that rules governing private websites have been delayed until 2018 at the earliest.
In 19901, after a few consumer lawsuits were filed due to seizures, game developers began including a seizure warning that has kept consumers from filing or winning such lawsuits. Although most game documentation and packaging contain a seizure warning, not all games contain seizure-provoking visuals. Consumers don’t know which games actually have potentially harmful sequences and largely ignore the warnings.
How you can prevent photosensitive seizures
If you’re susceptible, even a brief exposure of a few seconds to flashing can be enough to bring on a seizure. If you know that you are vulnerable to these seizures, there are some precautions doctors recommend to avoid being triggered:
- When possible, avoid situations and stimuli that are likely to be provocative, including emergency lights, electronic billboards, video games, light shows, flickering fluorescent lights, fireworks, animé and other fast-moving cartoons
- Wear blue-colored glasses, which filter out the most provocative light frequencies. Most opticians can make these inexpensively.
- In the presence of flashing light, cover one eye.
- Increase your distance if possible from the flashing image–so, for example, stay at least 6 feet from your TV screen, and don’t play video games up close.
- Don’t play when fatigued or sleep-deprived.
- Take frequent breaks during prolonged exposure–although this won’t always help if you are triggered in a matter of seconds.
Testing for visuals that can provoke seizures
I tested the trailer using an industry-standard application called the Harding Flash and Pattern Analyzer that detects image sequences that can trigger photosensitive seizures. It is based on algorithms devised by Graham Harding, one of the world’s leading experts on photosensitive epilepsy. The application is widely used by producers and networks in the UK—including by the BBC—to reduce the risk of seizures from material on broadcast TV. The analyzer examines video sequences frame by frame for very specific and measurable image qualities that researchers have found can trigger seizures.
Seizures from video shown on TV about 2012 Olympics logo
This is not the first time that Olympics-themed promotional visuals have placed viewers at risk of seizures. A promotional video for the logo of 2012 London Olympics logo shown on British TV news in 2007 resulted in seizures in some viewers. It had not undergone the required testing that would have alerted producers to the problem prior to broadcast.
Holy flashes, Batman! The Caped Crusader apparently doesn’t look out for people vulnerable to photosensitive seizures. The next game in the hugely popular Batman game franchise fails to meet photosensitive epilepsy image safety guidelines.
Batman: Arkham Origins will be released October 25 containing image sequences that could give you a seizure. If you are concerned about the risk of seizures, steer clear–or make sure to wear your blue Bat-lenses to block out seizure-provoking scenes. I tested official release trailers for the game and for Arkham Origins: Blackgate, a version just for handhelds, and found episodes of excessive flash in both violations. Of course, your results may vary, because with games it’s impossible to anticipate all potential screen sequences.
The previously released Batman: Arkham video games can trigger flash-induced seizures, too. With the same image sequence analysis tool I tested earlier Batman: Arkham games, Arkham Origins and Arkham Asylum, to see whether they fail as well. Indeed, they do. All three are portrayed not in old-fashioned comic book style, but in the style of today’s typical online adventure games.
Shown below are screen captures from the analysis tool as it assesses each of these titles. For those unfamiliar with the format of these test results, click on the screen to see it full-size. The upper left corner shows the specific video frame being analyzed. Underneath is a table showing the safety violations involving flash rate, red flash, and patterns. The bulk of the screen is a graph reflecting how video sequences from the game trailers measure up against international guidelines for preventing photosensitive seizures. Each second of video is composed of a sequence of 29 individual frames, and across the bottom of the screen the frames are shown in sequence in the video.
Have you noticed that watching TV is less annoying lately? Commercials are now required to be no louder than the programming surrounding them. On December 13 an FCC regulation went into effect that was designed for just that. The CALM Act, approved by Congress in 2010, directed the Federal Communications Commission to make it possible to watch TV without constantly turning down the volume of advertisements.
Since the introduction of television in the 1950s, many consumers have complained to the FCC about the loudness of commercials. What prevented the FCC from doing anything in response was that the issue was technically complicated. Multiple factors can contribute to the perceived loudness of a broadcast, including the strength of the electrical signal, the degree to which the sound signal is compressed. In addition, there was no standard method for content creators and broadcasters to measure broadcast volume.
In 2006, the International Telecommunication Union–the same UN-affiliated standards body that has published specifications for protecting TV viewers from photosensitive seizures–proposed a new technique for measuring broadcast volume that allows uniform evaluation across national boundaries. In addition, the ITU proposed a numerical “target loudness” using the new loudness gauge. Thanks to the ITU, it became possible to define, comply with, and enforce limits on loudness.
Four years later the United States Congress passed the CALM Act with little debate, by unanimous vote in the Senate and by a voice vote in the House. California Congresswoman Anna Eshoo, who introduced the bill, said it was by far the most popular bill she’d ever sponsored. She said the bill “gives consumers peace of mind, because it puts them in control of the sound in their homes.” She was quoted saying, “If I’d saved 50 million children from some malady, people would not have the interest that they have in this.” By that time the UK, France, Norway, Italy, Japan, Brazil, Israel, Germany, Austria, Switzerland, Poland, and the Netherlands were already limiting the loudness of commercials or had begun action on the issue.
These days even the video game industry is paying attention to some kind of audio standards, if only for consistency across products. According to an July 2012 interview in Designing Sound, Sony Computer Entertainment Europe is looking at smoothing out the volume among their own game titles.
Unfortunately, in this country making TV safer to watch for the visually sensitive–or making video games safer to play–isn’t on the legislative agenda. Consumers and policy makers aren’t aware of the need. The technical groundwork is already in place for regulations to prevent screen-induced photosensitive seizures, thanks to ITU specifications (and similar versions developed by the UK and Japan), and to similar guidelines adopted by the World Wide Web Consortium for web-based content.
Here’s where things stand at the moment in making US electronic screens safe for those with photosensitive epilepsy: Photosensitive epilepsy protection standards now apply to all federal agency websites. The Photosensitive Epilepsy Analysis Tool (PEAT) downloadable from the PACE Center at the University of Wisconsin at Madison makes available to website designers and software developers a free tool that tests screen content for compliance with seizure safety guidelines. The tool is not intended for entertainment industry developers, however; these companies need to buy commercially available assessment tools.
I’ve written previously about some of the complexities of bringing new screen safety standards to the American telecommunications industry. I”m going to learn more about the legislative process in coming months. My State Representative filed a bill last week to create a commission to study the issue of video game safety for minors at home and in school here in Massachusetts. It will take considerable time to even bring the bill to a public hearing, but as I’ve recently learned, all bills filed in the Massachusetts legislature receive a public hearing at some point in the two-year session. The two years just began this month. Stay tuned.
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.
What does it take to put regulations in place that protect consumers from visually induced seizures? A lot, it turns out.
The characteristics of specific sequences and images that provoke seizures are essentially agreed upon by researchers. They have been incorporated by a UN agency–the International Telecommunication Union–into safety guidelines for flash rate, flash involving red wavelengths, and in some guidelines, high-contrast patterns. Any government, standards body, production company, game developer, or educational institution can adopt them without needing to develop expertise in photosensitive epilepsy.
The World Wide Web Consortium (WC3) is the international group that produces standards that enhance Web usability for all types of applications. Within WC3, the Web Accessibility Initiative (WAI) develops Web Content Acessibility Guidelines, which extend the Web’s capabilities to people with a variety of disabilities. Its Guidelines for protection of people with photosensitive seizures are based on the guidelines for flash and red flash that are now mandatory for UK television broadcasts.
I love the clear wording of Guideline 2.3: “Do not design content in a way that is known to cause seizures.”
The WCAG standards have been adopted by about a dozen countries for government, and in some cases, other public websites.
Here’s how protections have been evolving in the UK:
- In 1993 three people in the UK reported seizures from a TV commercial for Golden Wonder Pot Noodle, and the British government responded by investigating what could be done to prevent another occurrence. The television regulatory agency put broadcast guidelines in place and has subsequently refined and updated them. The regulations apply to programming and advertising. These guidelines were used in developing the ITU guidelines.
- A few years ago Parliament took up the problem of seizure-inducing video games, in response to advocacy by a mother whose son had a game seizure, and her MP. Ubisoft in theUK, which markets the game, responded by publicly committing to producing seizure-safe games. The company has produced a set of guidelines for other game developers in the UKto help them comply with safety limits.
- The British Board of Film Classification, which screens movies prior to their release to rate films for maturity of audience, requests that film makers and distributors provide warnings to audiences about any sequences that could induce photosensitive seizures. When a scene in the Twilight Breaking Dawn movie caused some seizures in the US, the Board requested that notices be placed in British movie theaters.
- When the London Olympics logo was previewed in 2007, the promotional video set off seizures in some TV viewers, resulting in a big embarrassment for the Olympics organizers.
- After the 1997 Pokemon incident, the government conducted a number of studies to determine the total number of children who may have experienced any symptoms from that broadcast.
- Regulation comparable to what exists in the UK was put in place for children’s television.
So, now to where things stand in the US***:
- Websites maintained by Federal agencies and their contractors are now required to comply with accessibility standards for people with photosensitive epilepsy. Amendments to the Rehabilitation Act of 1973 (accessibility requirements known as Section 508), which protects employment for people with disabilities, has adopted the WCAG 2.0 standards, designed to increase accessibility to people with disabilities. It’s a start, but because it applies only to federal websites, it doesn’t help the vast majority of Americans, and it certainly doesn’t help children.
- Photosensitivity protection is included in WCAG 2.0 thanks to the efforts of Gregg Vanderheiden of the University of Wisconsin’s Trace Center, which provides a free tool, PEAT (Photosensitive Epilepsy Analysis Tool) that can be used by any Web authors to check material on their websites. Using PEAT, which is based on the analysis engine of the Harding Flash and Pattern Analyzer, authors can check that their media and websites don’t provoke seizures. It’s not for use with commercial software, though, such as games.
- The 21st Century Communications and Video Accessibility Act was passed by Congress “to increase the access of persons with disabilities to modern communications.” Enacted in 2010, CCVA empowers the FCC to make our nation’s telecommunications equipment and services available to people with disabilities. The Coalition of Organizations for Accessible Technology was behind this legislation, with groups representing many types of disabilities pressing for their constituencies. Conspicuously absent: epilepsy advocacy groups. The inclusion of protections for people with photosensitivity was not specifically mentioned in the act. However, if the act or its implementers incorporate the Section 508/WCAG standards, or Section 255 accessibility guidelines (see Telecommunications Act of 1996, below) developed for prior telecommunications legislation, then the photosensitivity protections will apply. Otherwise, photosensitivity protection will not go anywhere without significant effort by national epilepsy organizations.
- The Federal Communications Commission (FCC) needs to adopt Section 508/WCAG 2.0 standards for video games played over the Internet, and broadcast and cable TV programming and advertising. Packaged software that doesn’t involve the Internet probably comes under some other agency, like the Consumer Product Safety Commission.
- The Telecommunications Act of 1996, governing telephone and internet service providers and telecommunications equipment including telephones, computers with modems, fax machines, etc., contains provisions in Section 255 for accessibility to people with disabilities. Section 255 includes recommendations for minimizing flicker and flash and keeping it within safe intervals.This doesn’t pertain to the content of applications, though, just underlying connectivity service.
- Is the prevention of photosensitive seizures under the jurisdiction of Centers for Disease Control and Prevention? Apparently the agency was at a meeting in 2004 regarding the possibility of regulation in the US.
When Congress has the will, that drives everything. Congress passed legislation giving a mandate to the FCC to regulate the loudness of TV commercials. The bill passed unanimously in the Senate and by a voice vote in the House! A year later (December 2011) the FCC voted unanimously to implement a set of rules prohibiting advertisers from making their commercials any louder than the actual programming. This is great–starting in mid-December when the regulations go into effect, we can all be less annoyed and our eardrums will be protected during TV advertising. Now, if we could only get some more attention paid to the public’s health when it comes to photosensitive seizures.
***My thanks to Gregg Vanderheiden of the University of Wisconsin’s Trace Center for ensuring the accuracy of the above.
“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.
In 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.
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.
If your local optician can tint eyeglasses, it’s now possible to get protection from visually triggered seizures without ordering therapeutic Zeiss lenses. Lenses tinted using the new Deep Blue Zee lens tint are nearly the same color and appear to be just as effective as Zeiss Z1 F133 lenses.
Brain Power Inc. of Miami, and its UK arm, Brain Power Ltd. of Warwickshire, England, have introduced a cobalt blue optical tint that, according to the company, is nearly identical to the color-filtering specifications of the Z1 F133 lenses used in Capovilla’s photosensitivity studies. Brain Power, which supplies optical tints and laboratory equipment to opticians, optometrists, ophthalmologists, and lens manufacturers, developed the Deep Blue Zee tint specifically for photosensitivity protection. BPI describes itself as the world’s largest manufacturer of optical tints, chemicals, and instruments.
My daughter has been wearing a locally tinted pair for the past week and is finding them quite effective. She actually prefers them to the Zeiss because they aren’t quite as dark and therefore don’t darken her entire view as much. Because they’re not as dark, she is still able to see when watching DVDs from farther away from the screen.
The therapeutic properties of the Z1 F133 lens are due to its color and the way it blocks out shades of red. The amount of light a lens lets in across the color spectrum is measured by a spectrometer and shown in a spectrum curve (see graphs below), and each lens color has a unique spectrum curve. Capovilla and colleagues tried many colors and lens types before settling on the cobalt blue shade that lets in very little light in the red part of the spectrum. The big dip in this graph, excerpted from Capovilla’s 2006 study, shows that very little light is transmitted through the lens in the range of red wavelengths, measured in nanometers.
This is the Z1 spectrum curve from the Capovilla studies:
For the tint to be absorbed properly by the lens, the lens needs to be made of a particular plastic lens material, a plastic called C-39. If you have existing lenses you’d like tinted, they need to be made of CR-39 and can’t already have a hard coating that would prevent the lens from absorbing tint. BPI recommends that the lens be kept in the dye solution for at least 30 minutes to achieve the proper color. According to BPI, after half an hour of immersion in the dye, the absorption process goes more slowly.
As we’ve discovered in the past week, although the locally tinted ones weren’t as dark as the Zeiss lenses, it doesn’t seem to matter. If the lenses turn out not as dark as you’d like, your optician can make them darker by returning them to the dye solution for a little while. The price for tinted lenses will vary depending on the brand/quality of lens that your optician uses. And the quality and effectiveness may vary as well, depending on the optician’s skill, judgment, and choice of lens manufacturer.
The optician who tinted Alice’s blue lenses is:
Paul Dimos, owner
Eye Look Optical
1760 Massachusetts Ave
Lexington, MA 02420
The same day we got the new clip-ons, I had the idea that Alice might be able to watch certain DVDs (no anime!) on a small screen without needing to take so many breaks. She is doing well watching DVDs on a portable 7-inch DVD player. She sits several feet away from it so that the screen doesn’t take up too much of her field of vision. If she sat very close, that would cancel out the advantage of a small image that by its size minimizes the impact of video on her brain.
We now have a spare pair of cobalt blue clip-ons, allowing us the opportunity to compare the two side by side. Can you tell which is which?
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.
No one in a position to influence US health policy is actively representing the interests of people with photosensitive epilepsy, and it shows. The serious public health threat of seizures triggered by commonplace flashing images continues to be neglected by neurologists, health advocates, and policy makers.
A multi-agency report was issued March 30 that sets out national priorities for research, public and clinician education, and patient care. Epilepsy Across the Spectrum: Promoting Health and Understanding, released by the Institute of Medicine*, was authored by a committee of epilepsy and health policy experts. From the outset, it’s evident the report does not address seizures due to photosensitive epilepsy.
The introduction to the 377-page report begins this way: “Characterized by seizures that are unpredictable in frequency, epilepsy is a common neurological disorder…” Let’s stop right there. It’s already clear that this review does not consider visually induced seizures, because in many cases, seizures triggered by environmental stimuli are entirely predictable. What’s most important for the report’s authors to understand and convey is that these seizures can be prevented through education and by reducing environmental triggers. Unfortunately, photosensitive epilepsy is completely omitted from the report.
Failing to place photosensitive seizures on the national education and public policy agenda has grave consequences for many members of the public, particularly people who don’t even realize they are photosensitive. Consider the enormous degree to which public policies and education could improve the lives of individuals with photosensitive seizures (requiring seizure-safe TV as in the UK and Japan, for example), and you can appreciate the vastness of the missed opportunity.
The marginalization of patients with photosensitive epilepsy will be perpetuated while the (sponsoring) stakeholder organizations rally around the report’s recommendations. The American Academy of Neurology, the world’s largest organization of neurologists, has already pledged its support, citing the report’s call for the AAN to participate in the education of neurologists and other clinicians. The American Academy of Neurology, American Epilepsy Society, Epilepsy Therapy Project, International League Against Epilepsy, and National Association of Epilepsy Centers issued a joint statement of support: “As clinicians and researchers most directly involved in epilepsy care, we are pleased and impressed with the depth of the IOM study and specificity of its evidence-based recommendations. The path ahead has never been clearer…”
Meanwhile, the straightforward recommendations of a distinguished consensus group in 2005—to acknowledge and address photosensitive seizures as a significant public health problem—continue to gather dust.
“…The Photosensitivity Task Force of the Epilepsy Foundation
of America believes that a seizure from visual stimulation
represents a significant public health problem. No
known method can eliminate all risk for a visually induced
seizure in a highly susceptible person, but accumulation
of knowledge about photosensitivity is now at a level sufficient
to develop educational programs and procedures in
the United States that substantially will reduce the risk for
this type of seizure…”
— from Robert S. Fisher, Graham Harding, Giuseppe Erba, Gregory L. Barkley, and Arnold Wilkins, “Photic- and Pattern-induced Seizures: A Review for the Epilepsy Foundation of America Working Group.” Epilepsia Volume 46, Issue 9, pages 1426–1441,
The Institute of Medicine report is a disappointment for the photosensitive epilepsy community. The rampant seizure triggers in the everyday environment should be a focus of research, national health policy, public and clinician education, and patient care.
* Sponsors of the IOM report include the US Department of Health and Human Services, Administration on Developmental Disabilities, Center for Devices and Radiological Health, Center for Drug Evaluation and Research, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Center for Chronic Disease Prevention and Health Promotion, National Center on Birth Defects and Developmental Disabilities, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, Office of the Assistant Secretary for Health, Office on Women’s Health, and Office of the Assistant Secretary for Planning and Evaluation; and by members of the Vision 20-20 collaborative — American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding a Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen’s Encephalitis Children’s Project, and Tuberous Sclerosis Alliance. How can so many organizations completely overlook t?
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 firstname.lastname@example.org. 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 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:
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 aboveAntonio Bernabei Ottica Bernabei Via Del Corso, 4 Rome Italy Phone: +39 06.3610190 www.otticabernabei.it email@example.com
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?
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
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.
Canada T5N 3K5
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/