A few years ago, I developed a seizure disorder known as migralepsy. One of the first things I lost was the ability to attend concerts due to flashing stage lighting. Soon after social media GIFs started becoming very popular. The more popular the more ‘fancy’ they became with glittering flashing and moving graphic aspects. This past Christmas I had to repeatedly put out reminder social media posts letting my friends know not to send me GIFs because the flashing moving colors set off my seizure activity. When I have a seizure I lose time, thoughts, memories and they are painful for me.

I am now seeing a trend where chat leaders are asking for their participants to share their favorite GIF or one that says how they are feeling or reminds them of the topic of the chat. If I could I would make tweet chats (and events in general) related to health more open to people with seizure disorders and migraines, this would be the biggest request. I love participating in chats but have to be very careful about when others are participating and throw in a GIF, prompted or not, so that I can at least finish the chat without having a seizure or starting a migraine.

As a person who participates in many Twitter and Facebook chats, I would ask chat leaders to remind participants not to use flashing gifs so that they are not as dangerous. I have had to stop participating in some chats and that is sad because I like to contribute to my health communities and learn from others in the community. I know that most of the event/chat organizers had never thought of GIFs and their impact on epilepsy and chronic migraine patients. Maybe now can be the time.

There are many types of seizures; atonic seizure, absence seizure, focal seizure, epileptic spasms, epilepticus, psychogenic non-epileptic seizure, frontal lobe epilepsy, childhood absence epilepsy, abdominal epilepsy, to name a few. For many of these types there are some specific types of light or flickering patterns that can cause a seizure to begin. The speed or flicker (including fluorescent lighting) can cause a seizure. The flickering or “high frequency” light sources are often triggering for those with photosensitive epilepsy.

As an epileptic I must also must pay attention to the intensity, brightness, color wavelengths of light, distance from the flashing, visual patterns. I have special photosensitive epilepsy glasses that I wear if I know I will be exposed to these types of flickering lights, but they are not something I wear all the time as they are dark lenses and difficult to see out of for regular life activity. They don’t always stop the seizure but they can help lessen the symptoms after a seizure for me, especially the double vision. When I am participating in an online chat, it is very difficult to know if someone will through up a GIF that will set off my seizures or even a migraine. Which for me can lead to more seizure activity.

Although very few people will ever have to suffer the terrible effects that strobes and flashing lights of a GIF will have on those of us diagnosed with photosensitive epilepsy, migralepsy or migraines. I would love for people to understand what we go through and how much it effects our lives and the online and in-person activities we want to participate in. Last year, I suffered a debilitating photosensitive seizure after viewing a strobing GIF sent by a Twitter troll that kept me offline for days with vomiting, blurry vision, dizziness, and feeling like I was having an electrical storm in my brain. The dangers of these flashing lights are so real. There have been attacks specifically on epileptics using GIFs. For instance, in 2008 an Epilepsy Foundation had to temporarily shut down its website after hackers plastered the Foundation’s forums with flashing images.

Since many triggers for these seizures have been identified we can avoid them. But something simple like stopping flashing GIFs in a health chat can go even further in allowing a whole group of people participate without being on edge and waiting and worrying about the next post in the chat thread and what it might do to us.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone.

Barby Ingle
Barby Ingle
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website, www.barbyingle.com Barby has received more than 20 accommodations over the years for advocacy including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, I was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider MonkeyMagazine. In 2018, she received the Reality All Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2019 she was listed in the top 100 social media advocates for RareDiseases. In 2020, she was listed in the top 50 social media advocates for Rare Diseases and top 10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100; Patient Champion, and 2020 HITMC Patient Advocate of the Year.

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