Epilepsy

Photosensitive – I Am The 3 Percent

“Shielding my brain from the thing I love most. Light.” – Tiffany Kairos

 

sunglassesTiffanyKNEW

I was officially declared as having epilepsy in December of 2008 at the age of 22. So much to learn about the condition I would now be living with for however long the journey may be. A journey I was mentally, spiritually and physically preparing myself for each and every day from the moment I heard the words trickle out of the doctors mouth and into my ears settling into an understanding within me. As I journeyed learning what to do and what not to do….what to avoid and what not to avoid…. what triggered seizure activity and what what did not trigger seizure activity….over a period of time I began to notice a pattern of seizure triggers that sparked my interest.  A seizure trigger that I had never thought on before becoming diagnosed. It began to show signs of being a major problem within my life. However, previous to having epilepsy, I had never had an issue with this before. What was this trigger?

Photosensitive Epilepsy.

What Is Photosensitive Epilepsy

People with photosensitive epilepsy have seizures that are triggered by:

  • Flashing Lights
  • Bold, contrasting visual patterns (such as stripes or checks)
  • Overexposure to video games

For an estimated 3%  of people with epilepsy, exposure to flashing/flickering lights or to certain visual patterns can trigger seizures.

In becoming aware of this seizure trigger, it became apparent that wherever I go, my sunglasses would need to go with me too. If need be, I would kindly vocalize my request to be excused from whatever area might have lighting placing me in a dangerous situation. As time progressed, and my journey continued, I would find more examples of photosensitive trigger dangers to be mindful of.  At times, friends and family couldn’t quite understand why I might be wearing my sunglasses when and where I chose to and I would take the time to explain about Photosensitive Epilepsy and how it triggered my seizures helping them to better understand.

What are some examples of photosensitive triggers?

Photosensitive Triggers

  • It has been speculated that flashing lights on the top of emergency vehicles may trigger seizures in people with photosensitive epilepsy
  • Sunlight, especially when shimmering off water, or flickering through trees
  • Strobe lights
  • Certain visual patterns, specifically stripes of contrasting colors
  • Certain video games
  • Television screens or computer monitors as a result of the flicker or rolling images.

I found that I myself indeed fall within all of these very triggers and more that aren’t listed above. I fell within the 3% of the 65 million plus living with epilepsy. If I’m wearing my sunglasses in a location or at a certain time of day you may not suspect one might wear sunglasses, I’m more than likely doing what is best to protect myself from seizure activity. It is not a matter of an attempt to look like a superstar or for vanity’s sake. Of course, I do love sunglasses. I’m a girl. I would be lying if I didn’t say I don’t love sunglasses. However, if it’s at a time out of the ordinary, consider that situation as a person living with epilepsy.

Not everyone will understand this because not everyone knows me and knows the condition I live with. In time, I hope to have more opportunities to speak about epilepsy, living with epilepsy and this very topic. Should situations every arise, of course I’m always happy to engage and educate about it. Epilepsy education is key to a better understanding of the condition and a shattering of the stigma.

So here’s to sunglasses and sunshiny days!

 

 

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

2 Comments

  • Miranda Honaker

    Tiffany,
    Thank you for this great blog about Photosensitive Epilepsy! I, too, have photosensitive epilepsy. I had my first seizure when I was in fifth grade (I’m now 19) and had three more over a few years after that. I am now seizure-free for seven years. I loved what you wrote because it’s all so true. Often when I speak to someone who has epilepsy their triggers are nothing like mine. Theirs might be sleep, alcohol, or even not eating enough. I learned that I’m apart of a 3% that I had no idea about. It’s crazy to think that that many people deal with this. It makes me feel like I’m not alone in this. And I completely understand your need to wear sunglasses. I love my sunglasses and wear them whenever I want to and often sing “I wear my sunglasses at night” just to get giggles out of the people I’m with at the time. I just wanted you to know that this meant a lot to a girl who’s been dealing with photosensitive epilepsy since I was about 10. It affects me everyday of my life. I’ve missed out on so many opportunities being afraid that I would have a seizure. I’ve missed out on concerts, movies, riding roller coasters, playing video games with people, and many more. But I have good news! I went to my first concert last year and nothing bad happened (thanks to my boyfriend for covering my eyes during the bad parts). And I have two concerts coming up! One this month and one in December. I’m not letting it control my life anymore. Thank you again Tiffany! And I’ll be checking in on what you write more often 🙂
    Your photosensitive epileptic friend, Miranda

    • tkairos

      Hi Miranda 🙂
      Thanks for checking out the blog! You’re one of the 3% too huh? Having the photosensitivity is definitely tough. Congratulations on being 7 years seizure free! That is so wonderful to hear! 🙂 I hope and pray you continue on a path of seizure freedom for a lifetime. Thanks so much, I’m happy that you enjoyed the blog! It’s very good to be mindful of all the known triggers but yes the photosensitivity is a big one most certainly for me. It developed quickly into my diagnosis. You’re absolutely not alone in this. 🙂 You’ve got plenty of great support along your journey. My sunglasses are my body guard so-to-speak. LoL. Or in this case, my brain-guard. 🙂 HaHa I like that! That’s a way to lighten things up! Stay strong and never give up hope! God is so good and I know one day a cure will be found. I know exactly how you feel Miranda. I’m sorry that there’ve been some events that you’ve had to opt out of but don’t you worry because life has so many amazing things to embrace and be a part of. 🙂 That’s great that you got the chance to attend your first concert last year! Who did you go see? How sweet of your boyfriend to do that for you. 🙂 That is excellent to hear your strength in not allowing epilepsy to stand in the way of what you want out of life. Epilepsy doesn’t own you. 🙂

      You’re very welcome Miranda!
      Take Care & God bless!

      Tiffany

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