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Video Game Seizure Warning – A Guide To Epilepsy

If you’re a gamer, I’m sure you’ve seen a ‘Seizure warning’ or ‘Epilepsy warning’ just as the game is starting. I was surprised by how many people actually don’t know a lot about this illness or are very misinformed.

That’s why I’ve decided to write up this post, mainly to educate and explain what epilepsy is, what types there are, how to help a person with a seizure and the history of seizures and video games in easy to understand way. I’ve also gathered some questions from my friends and I’m going to answer them here.

As I’ve been first diagnosed with epilepsy when I was 15, I’ve asked my doctors all there is to know. I’d also like to share what my life is like living with this illness.

Video Game-Induced Seizures (VGS)

Video game-induced seizures can be attributed to photosensitive epilepsy. It’s a type of epilepsy which is triggered by flashing lights (strobe, low-frequency TVs and monitors, sun through trees when you’re inside a car, sun glinting off of windows, etc.) or repeating contrasting patterns (stripes, checks).

Many video games have explosions or flashy effects which can trigger a seizure in some people. Most people think epilepsy is caused by flashing lights. While that is true, only about 3-5% of all diagnosed patients truly have photosensitive epilepsy.

The thing with epilepsy, you can have seizures and not even know it. These seizures can not only be caused by video games but also arcade games.

The Video Game Epilepsy Warnings

Video game seizure warning

The first warnings began appearing in 1991 in response to the first video-game-seizure consumer lawsuits (most notably, lawsuits against Nintendo). Most of these lawsuits were either dismissed or the consumer lost.

Ever since then, game companies have been putting up these warnings before the game starts. Have you ever read the warning or do you just skip by it?

Media Guidelines

In 1997, more than 600 children experienced a seizure during the airing of a Pokémon episode in Japan. While some experienced only mild symptoms like headache, some children had to be hospitalized for loss of consciousness and vomiting. The seizures were caused by rapid flashing caused by blue and red colors for about 6 seconds in rapid succession.

Professor Graham Harding was an important figure in the photosensitive epilepsy research. He figured out which frequencies, colors, brightness and sizes were most likely to cause seizures and that enabled him to create a guideline for media to minimize them. He thought that the video game warnings weren’t protecting the consumers enough.

That’s why later he created the automated Harding Flash and Pattern Analyzer (FPA) which corporations can use to test their products for risk of seizures. The paid tool is available at the Cambridge Research Systems Ltd. website.

While this can rapidly minimize the risk of seizure, it’s impossible to predict all the instances. No person’s case is the same.

What Can I Do To Avoid A Seizure When Playing A Game?

Well, first you should definitely read the warnings because they too include info on how to avoid seizures. While they’re mostly there to protect the company from liability, they are there for a reason. Please remember that you can get a video game-induced seizure at any point in your life (and sometimes not even know about it).

Here’s what you should do to reduce the risk of a seizure:

  • play in a well-lit room
  • the distance between you and the monitor or TV should be 3 times the width of the monitor
  • play on a smaller monitor, use an LCD and if you can, make sure the frequency is higher than 60Hz
  • don’t play when you’re tired, sick or have a headache
  • take a break each hour of gameplay
  • wear special glasses (more below)

Now be honest, which of these do you follow regularly? 😉

What Is Epilepsy?

Epilepsy is a non-contagious disorder of the brain, where the person (or animal – it’s not just a human thing!) experiences seizures caused by unusual electrical activity in the brain.

Epilepsy can be caused by a lot of issues or the cause might be unknown, which is pretty scary to think about. Seizures caused by alcohol or drug use, overheating, low blood sugar, etc. aren’t considered epilepsy.

These seizures aren’t always visible and aren’t always the types of seizures you see in movies with the loss of consciousness and violent shaking. There are many types of seizures and no epilepsy diagnosis is the same.

The type of seizure depends on where in the brain the nerves misfire:

  • Focal seizures – They’re located in one part of the brain. You don’t lose consciousness. There are types of focal seizures, depending on your symptoms. I’ll write about the symptoms below.
  • Generalized seizures (grand-mal) – Your typical loss of consciousness seizure. They affect the whole brain.

Around 50 million people worldwide have epilepsy (about 1 in 100 in the US). If you’ve had a seizure once in your life, it doesn’t really mean that you have epilepsy, you need to have more than two to be considered for the diagnosis. It’s estimated that about 10% of people will have one seizure in their lifetime. About 150,000 people a year are diagnosed with epilepsy in the US.

Is It a Hereditary Thing Or Can Anyone Develop It At Any Time?

I’m afraid that you can get it at any age, though it appears mostly in childhood or after 60 years of age. It can be hereditary to a degree, doctors believe it’s a mutation of some genes that make people more predisposed to the illness though they’re not completely sure. The brain is a complicated organ and I don’t think we fully understand it but we’ve come a long way since burning people for being witches possessed by the devil. 🙂

If epilepsy runs in your family, you’re more likely to get it than someone who doesn’t have a family history with it.

What Are The Causes?

As I mentioned above, one of the causes could be a family history. Another cause could be a head injury, in which case the seizures might fade away on their own or they might not. When they don’t, it’s called post-traumatic epilepsy. This includes post-brain surgery epilepsy as well.

Another cause could be brain issues like tumors, stroke, Alzheimer’s disease, problems with veins and arteries in the brain. Some infectious diseases like AIDS, meningitis or encephalitis can also cause epilepsy.

You are also at greater risk if your mother had an infection during pregnancy or if there wasn’t enough air during birth for the baby, which in itself can cause multiple brain defects. Disorders such as Down syndrome or autism can also put you at a greater risk.

Unfortunately, the cause is not always known.

What Are The Triggers?

Some people can identify what causes their seizures to happen and can avoid these situations. Unfortunately for other people, the triggers are unknown.

Common triggers include:

  • flashing lights – usually between 3-30Hz (flashes per second), some people can be sensitive up to 60Hz frequency (TV, monitors, flash photography, sun through trees…)
  • contrasting geometric patterns
  • alcohol and drugs
  • lack of sleep
  • skipped medication
  • music – very rare!

What Are The Symptoms?

As I mentioned above, there are two types of seizures. With focal seizures, you stare off into space (petit-mal seizures) and aren’t aware what’s happening around you. Or you can be fully aware and respond to others while there is an abnormal activity going on in your brain. Or you could have some involuntary twitching (mostly hand, leg, jerk of the whole body).

Some symptoms are so vague that they can be chalked up to OCD, nervous ticks or other health issues. You can experience strange smells, visions and sounds, confusion and generally feel weird without any apparent cause.

With generalized seizures, things get a little bit scarier for the onlooker (the patient too, but they are generally blissfully unaware anything is happening). The affected person passes out. There may or may not be twitching and jerking and shaking, the person can vomit or lose control of their bladder. They can grit their teeth, bite their tongue or cheek.

These seizures typically last from seconds to minutes.

Can Epilepsy Cause Death?

Epilepsy itself doesn’t cause death. Usually, it’s the consequences of the seizures that are dangerous. If you’re having a bath, you could drown. You can hit your head on a piece of furniture. If you don’t know you have epilepsy and drive a car, a seizure can make you crash.

Sometimes death can happen to people with epilepsy. There is an acronym SUDEP, which means Sudden Unexpected Death in Epilepsy. If the autopsy rules out any other causes of death in a person with diagnosed epilepsy, they usually classify it as SUDEP but it doesn’t explain the cause.

On July 3, 2019, a Disney star Cameron Boyce died at the age of 20 (source). He had epilepsy and his family found him one morning unresponsive. He passed away in his sleep and his death was classified as SUDEP.

The seizures can be dangerous when you go into a state called status epilepticus, which basically means that the seizures don’t stop after a few minutes. Having a seizure is extremely draining and if you’re in this state without any help, your brain can swell.

Sometimes the airways get blocked (vomit, tight clothes) and without help people can choke to death. Other times the seizures can cause dangerous heart rhythm problems which can result in heart failure, though that happens rarely.

People most at risk for SUDEP have untreated/undiscovered epilepsy.

How Do Doctors Diagnose Epilepsy?

If you are concerned about your health, speak with your doctor who can refer you to a neurologist. They will want to know your symptoms, so don’t be afraid to tell them everything even if you think it’s not relevant. It’s not easy to diagnose just by symptoms alone as I mentioned above. The doctors usually run these tests:

Physical Test

The doctor will test your reflexes (usually by tapping certain spots like below your kneecap with a reflex hammer), how you walk, your coordination, etc. They can also run blood tests.

EEG (Electroencephalogram)

EEG measures brain wave activity. You get to wear a fashionable cap. Usually, you’re laid in bed and following the doctor’s instructions on how to breathe, when to open your eyes to see how your brain responds to the stimuli.

Part of the EEG is also a light test, which is basically a strobe light that flashes above your head in various frequencies. It’s there to determine whether your seizures are provoked by light (photosensitive epilepsy).

There is also a type of EEG test called the sleep deprivation EEG, where you are awake for 24 hours and then you have the EEG measured.

And no, don’t worry, EEG can’t read your thoughts. 🙂

CT (Computer Tomography)

MRI machine
MRI machine

CT or CAT scan will give the doctors a detailed scan of your brain. The image is created by X-Rays, which produce 2D images which are basically the scanned layers (or slices) of the brain from multiple angles. It’s used to identify possible structural damage to the brain (tumor, internal bleeding, swelling, etc.)

MRI (Magnetic Resonance Imaging)

MRI doesn’t use X-Rays but rather magnets and radio waves to create an image of the brain. You’ve probably seen it before in shows and movies – it looks like a donut. It can get pretty claustrophobic and loud during the screening but you can ask for earplugs or headphones.

How Is Epilepsy Treated? Can It Be Cured?

Well, not entirely. There are some children who stop having seizures as their brain matures. Post-traumatic epilepsy can resolve on its own. If your epilepsy is caused by an operable brain tumor or infection, you may be cured.

For the rest of us, it means taking medications. They don’t cure it but they control the activity in the brain and can often prevent a seizure. There are many different types of anti-epileptic drugs (AED) and each of them has different ways affecting the brain.

Unfortunately, some people either have serious side effects or the drugs don’t work on them. This is when brain surgery comes into play (if possible) or other means such as vagus nerve stimulation or the ketogenic diet.

Can I Prevent A Seizure?

Generally, no. However, if you’re taking your medication and avoiding your triggers, you can prevent a seizure this way. If you are photosensitive, you can try covering one of your eyes and that will greatly reduce the photosensitive effect.

Some people experience an aura, which is a feeling that a seizure is incoming (strange smells, visions, auditory perceptions, it’s different for every person…). You can’t stop it but you can make sure you’re lying down when it happens to avoid an injury from falling.

If you often experience seizures, you might want to look into a service dog. They can sense when a seizure is coming and appropriately warn you so you can take action and lie down for example. Or they can be trained to alert caregivers or ring an alarm. Gotta love dogs!

Obstacles In Life

Day To Day Life

Unfortunately, epilepsy still carries a lot of stigma and misconceptions and people are afraid to tell others about their condition but it’s different for everyone. The first advice from the doctor would be not to drink alcohol or do drugs, get at least 8 hours of sleep, eat a healthy diet, avoid triggers, don’t take baths, don’t lock inside doors, and reduce your stress.

Jobs

When looking for a new job, people don’t know when to tell the employer. Should I tell them at the interview? After I’m hired but before I start working? Or wait until I’ve proven myself and created good relationships in the workplace? It comes down to personal choice and whether your epilepsy is controlled with medication.

If you’re hired and you tell your employer before you start working, they can’t take their offer back if you’re fully capable of doing said job. Of course, there are jobs that you shouldn’t be doing with epilepsy but that goes without saying. You can read more about this topic on the US Equal Employment Opportunity Commission website (source).

Friends And School

It’s not uncommon for people with epilepsy to feel embarrassed and tell their friends. If you’re in school, some people may not understand and you can become a target of bullying for being different. If you’re young, your parents should inform your teachers. You don’t have to disclose your condition to anyone else if you feel uncomfortable.

There could be mood swings, problems at school with concentration and poor marks, as well as signs of depression and anxiety. The biggest issue is trying to be a normal kid while your parents are worried about you and your teachers treat you differently.

Family

If you’re a woman with epilepsy on medication, chances are your neurologist has spoken to you about your plans to have kids. Antiepileptic drugs could potentially harm a fetus, so all pregnancies must be planned and in some cases, the mother needs to stop using the medication or switch to a milder one. That alone can cause other issues such as the return of the seizures.

Driving

Every state in the US has different specifications as to when/if people with epilepsy can drive. (source) You should be free of seizures for a certain period of time and you need to have your doctor’s approval.

How Can I Help Someone With a Seizure?

Here’s what you should do when you see someone having a seizure with loss of consciousness and convulsions:

FIRST AND FOREMOST: STAY CALM!

  1. Look at the time – you have to monitor how long the seizure lasts
  2. Make sure to remove any furniture and objects away from them, only move them if they’re in a dangerous place (like the middle of the road)
  3. Try to cushion their head (sweater, your hands) to stop them from banging it on the ground and causing further injury
  4. Don’t hold them down to stop the convulsions, it won’t work
  5. Don’t put anything in their mouth – chances are their jaw will be locked and you won’t be able to pry it open. Don’t try!
  6. Keep track of the time – grand-mal seizure shouldn’t last more than 5 minutes. If it does and the person keeps seizing, it’s time to call an ambulance. You can delegate the task to someone else if there are more of you present.
  7. When the seizure stops, gently roll the person on their side into a recovery position. Make sure they’re breathing and stay with them until they regain full consciousness.
  8. It’s going to be embarrassing for them, so make sure to calm them down and shoo away any curious onlookers. In case they have lost control of their bladder during the seizure, try to deal with it discreetly.
  9. They might ask you to do something for them – call their relatives or friends to pick them up, have you sit with them for a little longer or walk them home if it’s not far.

Make sure you tell them what happened, how long the seizure lasted and other details. They can then pass it on to their doctor.

You only need to call an ambulance if this was their first seizure (if it’s a stranger, try looking for identifying things like a medical bracelet or a medical card in their bag) if they have injured themselves, if the seizure lasts for more than 5 minutes, or they have trouble breathing afterward.

Charities

There are many charities and non-profits that you can support if you’d like to help make a difference. Here are some of them:

My Experience With Epilepsy

My First Seizure

I experienced my first big seizure when I was around 15 before I went to high school. At the time I was home alone with a cold and sat in front of the TV (old CRT) trying to decide what to watch. I woke up on the ground disoriented, thinking I just fell asleep. For some reason, I started crying but got myself up and in bed again. I didn’t think too much of it though, considering I was sick and tired. I didn’t tell anyone and only a few years later I realized what had actually happened.

My Second Seizure

My second “official” big seizure was shortly before a family trip. I remember sitting in front of the TV with my sister, programming our VHS to record something while we would be gone. The next thing I remember I was waking up on the sofa with no recollection what had happened, my parents and paramedics standing around me asking me questions.

It must have been a very scary experience for my parents and my sister. I was taken to a children’s hospital, my mum rode with me in the ambulance. The details of that are very hazy as it tends to be after a big seizure plus it has been about 18 years.

They drew some blood, did an EEG test, I spent about 5 days there. I can’t remember if they put me on medication or not, but I don’t think they did, my EEG results were inconclusive.

There was a period of time when I was waking up about an hour or two before school because we believed the seizures only happened in the two hours after waking. Of course, we didn’t know at the time that the culprit was the flashing light.

My Third Seizure

My third big seizure happened when I was 17 or so, it was during the summer holidays, I was staying at a friend’s house and we were alone for about a week with her dog. We woke up, I decided to open the blinds and when I did, I was assaulted by sunlight. In my prior seizures, I didn’t know they happened at all. This time I saw my right hand shaking and then I felt myself fall down, bang my head against the balcony door and then everything went black.

Video Game Seizure Warning – A Guide

My friend knew about my condition but I imagine it must’ve been scary to witness. I woke up disoriented, moved to the sofa in my half lucid state. I clearly remember that I asked my friend how I got onto the sofa later. This perfectly illustrates the disorientation one can have after a big seizure.

My friend called my parents, who took me to the hospital. I spent there about a week, this time they did a bunch more tests, including sleep deprivation EEG, sleep EEG, CT, and MRI. 

After that, they put me into the care of a great neurologist, who was very kind and understanding and explained everything. I was put on a low dose of mild seizure medication and I’ve been on it ever since. I had a checkup twice a year plus once a year an EEG screen and blood test to see if my medication is damaging my liver. Thankfully everything is okay.

Once during my EEG checkup, they tried the flashing light test and at one point I felt myself shaking and couldn’t stop it. I didn’t fall completely into a big seizure. They called my doctor and she could see the light was triggering me, so they stopped it. Ever since then my EEG tests are made without the flashing lights trigger. Thank god, because it’s terrifying.

My Fourth Seizure

My fourth big seizure was at home when I was watching TV (again, old CRT) in the evening.  It was after I passed my driving lessons. That was a big hit for me and my doctor couldn’t give me permisson for my driving license. It was at that point that I decided I’m never gonna drive even if I could. I just don’t want to risk people’s lives.

Since then I have been seizure-free which will make 2019 about 14 years since my last seizure. I go once or twice a year for a checkup with my neurologist, I get blood drawn once a year and also for EEG checkup.

Gotta be honest, as thankful as I am for these tests and our health care system in general, I really dislike the EEG. The goop goes in your hair and you can’t really blot it out with provided paper towels, only washing it works. Plus you get indentations in your forehead from the diodes, so when you go home, you look like an alien with gross gooey scalp and four diode marks on your forehead.

Quality Of Life

I’ve got to be honest, being diagnosed with epilepsy at 15 is no walk in the park. Those years are for self-discovery and I spent a lot of the time in fear of when another seizure might strike. As such, I kept everybody at arm’s length, didn’t really want anyone to know.

At the same time, I felt overprotected by my family for a number of years. And I get that, it’s kinda scary. But I’ve learned to live with it and I’m thankful that I’m aware of what provokes my seizures so I can avoid certain situations. I don’t think I would be who I am today without epilepsy. I guess it matured me a lot faster as I didn’t get to be an irresponsible teenager. I’m missing chunks of memory from my childhood and the time when I was a teenager but that’s okay.

There are certain things that I can’t do by default and I don’t mind. I do miss not being able to attend concerts (unless they’re in broad daylight and strobe-light free- good thing I like classical music, musicals, and theatre!) and perhaps driving but I’m generally a worrier and overthinker, so maybe it’s better I decided not to drive. 🙂

Video games thankfully don’t cause me issues. Closing one of my eyes during flashing scenes and turning my head away when possible is almost like second nature.

Conclusion

I’m sorry for such a lengthy post but I feel like everyone should know about this. It would end the stigma and misconceptions and people would be more willing to help.

Let me know if this article helped you in any way! Have you ever witnessed a seizure? What was your reaction? And if you didn’t, after reading this, do you feel more prepared to help? If you have any questions about my experience, let me know!


Sources: Epilepsy Foundation, World Health Organization (WHO), Centers for Disease Control and Prevention (CDC), WebMD, International League Against Epilepsy (ILAE), my neurologists


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2 comments

  1. Geeky Gamer Avatar
    James A Vlaskamp
    November 18, 2019 at 6:57 pm

    I am wondering about First Person Gaming specifically. If I try to play First person games of any kind, within a few minutes I develop a headache. Stopping then the headache will pass but takes hours. Continuing to play when the headache onsets I will become nauseous. Stopping then I will have the headache the remainder of the day, may or may vomit and be weak and ill the remainder of the day. If I try to push thru this feeling of dizziness and nausea I will pass out. When I awaken My head feels as though I’ve been ran over by a train, I will vomit for quite some time afterward (dry heaves as well) and be out of commision for 2-3 days. I have tried many times to train myself to play these type of games because they are popular and I enjoy gaming with my friends. For now I am unable to and that’s ok I suppose but curious as to your thoughts or findings on the matter of First person gaming. Thank you for your time and God Bless

    Reply
    • Dana
      Author
      November 18, 2019 at 9:52 pm

      Hi James, I’m very sorry to hear about your issues!

      I’m not a doctor, so I can’t diagnose your symptoms. Have you tried the suggestions in my article, see if anything changes? (distance, well-lit room, etc.) I know some people can’t play first person games because they get motion sickness.

      Please go see your doctor and describe them your symptoms. Best of luck and let me know how it goes!

      Reply

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