heather06

Hey-

My name is Heather, and I've been diagnosed with Photo-Epilepsy. I am 19 years old, and the only time I have ever had a seizure has been because of lights. I went in and had an EEG done, came back perfectly normal. I was furious and FORCED my doctor to put a strobe light in my face and make me have a seizure. I wanted to have a seizure so it would register on the EEG reading because I knew thats the only time it would read; and I was right. The reading was incredible, and the lines on the computer screen almost came from one end of the monitor to the other; total difference in the reading with verses without the strobe light. Without my persistance, they would have never diagnosed me with it. My Neuro told me only 1-2% of people with epilepsy have that type but it does exist. I take 400 mg of Zonegran a day and 3000 MG of Keppra a day, both twice a day, but it took years to perfect that dosage and trials and errors of about 5 different medicines that didn't work at all before i found those two that did work for me. It got so bad that I couldnt ride in a car without the sunlight flickering between the trees making me have a seizure (thats what hurt affected me the most) and made my teenage years a living hell. I literally was a night owl because of the sun, or went out during the day when it was raining. I would go into supercenters and one of the lights would be attempting to go out, and it would drive me bonkers, until i would rush to get my merchandise to leave the store, then always have a headache. My advice to you is if you do get an EEG done, to make them use the light and test for the photo aspect, as much as it is going to kill you inside to watch your child suffer. I was diagnosed at the age of 4, and know it killed my parents to watch that, its helped me in the long run to truely know whats wrong.