photo sensitive - Epilepsy Message Board

i love my alfie · 07-02-2003, 05:18 PM

hi there, i was/am wondering if any one had a seizure from strobe light effects?

i had one first when i was 17, and again at 18, then at 39 or so. i am now 46.

for the most part if avoid everything in life that has to do with lights, sun filtering thrugh the trees, ceiling fans with lights under them, etc..

anything that can give off a strobe light effect. i have not been on meds for this because all i have to do is be carful with the light situation...

while i have managed for the most part to avoid having a seizure in the process i have developed agoraphobia/anxiey stuff for fear of having one.

so now i find myself stuck in this agoraphobia situation and each time i have an anxiety attack, it is the exact same aura feeling that would have before having a seizure.

so now i have limited my life to such a small comfort zone out of my fears that i don't know what to do anymore.

my husband wants to go to vegas and california in a few weeks, and the closer the time gets the more paniced i am getting..

so has anyone had this problem or had to deal with a constant fear of seizing that they became anxiety ridden or agoraphobic..i just don't know how to deal with this anymore..

i hope to hear from anyone!

mommajessibelle · 07-02-2003, 06:14 PM

after having an eeg done about a year ago i was told that i had the photo sensitivity .strobe lights light filtering through trees etc.after being told this i was very careful for along time about what i did but after a while i got sick of being in fear and so i basiclly said to hell with it if im going to have epilepsy im still going to have a life and i do i go to casinos and i have fun and it doesnt seem to bother me after a while being there i will get a head ache but that could be from the noise too.i have never had a seizure due to lights although according to my eeg it showed i had that sensitivity you cant avoid all lights or you will never have a life

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mother of 3
ages 4,3,and 1
my pride and joy

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

violarose · 07-02-2003, 06:35 PM

I had a seizure while I was with my girls at a skating rink. very embarrassing because it was with the preschool parents. I understand the fear of having seizures. When mine were out of control I hit my head alot when i passed out. so I became kind of scared of walking in stores because of the tile. but now that my seizures are in better control, my selfconfidence is coming back and I forget that I even have seizures, so I dont have the anxiety of the floor. i really think maybe talking to your DR about this, maybe be put on a anxiety med? so you can have a better life?

Porkette · 07-05-2003, 04:54 AM

Hi,
I'm also photo sensitive and strobe lights will cause me to have sz. My Epileptologist ordered a special type of e.e.g. to be done where they would flash different color strobe lights to find what colors triggered sz. After the test was completed they found I was most sensitive to white, green, and amber colors, these are the main colors that will trigger sz. for me. What bothers me more than anything is the sun shining down on the snow in the winter months.
You also mentioned that you get an aura, I know this may sound weird but the minute you begin to get an aura tighten all the muscles in your body and make your hands into tight fists this will often stop a sz. I learned about this back in the 1970's and take my word it has stop many complex partial, and absence (petit mal) seizures for me over the yrs.
Here's wishing you well and May God Bless You!

Sue