photo sensitive seizures anyone? - Epilepsy Message Board

jamieileana303 · 11-30-2007, 03:28 PM

i have had photo sensitive convulsive disorder since i was about 17. i am now 50 and as to this day i run and hide from it and my life is lived in a little box.

this time of year when the sun curves and it is low in the sky my life is limited to 10-4 sometimes even as early as 2:00 ihave to go home!

it ruins my life and makes me so mad! so i avoid trees, buildings, poles and anything else that can and does make a strobe light effect. doesnt help living in colorado either as it is always sunny here versus minneapolis where i am from and it is cloudy alot of the time.

so i was wondering if anyone else lives with this condition? i do not take meds for it. i wear polarized sun glasses and live in a shell..

MWomack · 11-30-2007, 06:45 PM

My exgirlfriend has this. She does not do anything like you ( your good). She tries to ignore it and goes on everyday like it doesnt exist. She has mini seizures that seem to make her almost go into a blackout or the most severe I have seen is staring into space, never responding to stimuli. I know its tough now because I have partial epileptic siezure risk since my bike wreck. My only hope(since I still love her but cant deal with her attitude) is that she starts taking care of herself like you. I have been told that some siezures cause permenant brain damage. Find a friend to come over or maybe have someone drive you to a place that does not have the strobe effect anywhere near you. You could go so far as to move in to the desert where not much flashing happens there unless your in a big city and cops are chasing someone. Keep going and good luck.

life_is_good · 12-01-2007, 02:39 AM

Jamie,

This is going to sound like a lecture, but I just had to jump in here with a response. You've had epilepsy for so many years. Why are you letting epilepsy continue to run/ruin your life? Can I ask why aren't you taking medication for it? I am photosensitive also, the sun flickering through the trees in the car can -and has thrown me into seizures. I also have other seizures as well, both grand mal and petit mal. They call it by other names nowadays. I have since taken medication and have had my car windows tinted. State law will allow you to tint darker than the average population is allowed to, if you have certain medical conditions. I've been both on and off medication and can tell you from personal experience that the medication, (while I hate taking it) has definitely enabled me to live a more liberating life. I know my seizures are under control and I don't have to worry (as much) about if and when they are going to pop up. And if they do, they do, epilepsy is part of who I am. I do not live in shame. Polarized lenses are a good start. Avoiding strobe lights is another good thing. But please consider seeing a neurologist and getting yourself on medication. You're missing out on LIFE.
Please don't cheat yourself, life is too short.

sammi2 · 12-04-2007, 08:42 AM

It is very stressful living with this disorder. I can't drive much anymore because of the light reflecting off cars trigger a migraine. Once I see the light I'm pretty much done for & if you drive you can't avoid them. I have a vision problem so wearing dark glasses are out for me. I need a lot of light just not strobe or sun on cars. Seizure meds do not help me for this problem. good luck to you.

life_is_good · 12-05-2007, 04:42 AM

Sammi,
I have eyeglasses that reduce glare and they have been so helpful in this situation. There is a coating on them that enables them to reduce the glare so you don't get the starburst effect from the headlights of oncoming cars or streetlights. It also helps with reflecting light off of other cars, I had this problem as well. I also leave more distance between cars and found this helps as well. This is how I was able to deal with it. Good luck to the both of you.