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Old 03-26-2006, 06:22 PM   #1
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heather06 HB User
Keppra and Photosensitive Epilepsy

Hi, My name is Heather, and I am 19. Ive had a problem since the age of 4 having seizures with lights from such as the sun and video games, etc. but my parents could never get a doctor to listen to them, and always blew them off. Finally, upon switching doctors, i was referred at the age of 16 to a neuro surgeon that listened that placed me on Lamictal, and after taking it for only a week and a half, and a trip later to the ER from a reaction to it, I learned a rash all over my body wasn't how it was supposed to be. I made another 8 hour drive back to my neuro (only 3 neuros in my state) and a week later, i was put on Zonegran which I was put on 400 MG a day. I took it all at one time (10 pm) this worked miracles, but at the time i was like of dumb of seizure medications and didnt know that was the cause of me loosing a lot of weight. I didn't complain, until i lost way to much of it thoughout the course of about two years, i had lost about 100 pounds. I didn't know that weight lose doctors also prescribe this medication for obese patients just for weight lose (another use of Zonegran) Well, anyways, i began looking anorexic (got down to about 100 pounds (im only 5 foot tall) and the docs lowered the dose to 200 mg a day, but then i began having seizures again, but i began gaining weight. i was then put on 250 mg of Zonegran which forced me to buy two seperated prescriptions of Zonegran, which if you all have ever bought it, its like 400 dollars. EXPENSIVE, I was still having seizures at the 250 mg level so my neuro wanted me to start this study to see if Keppra would work for my type of Epilepsy. He said the type of Epilepsy I have is rare, and only 1-2% of people with epilepsy have my type. i ONLY have seizures from lights flashing in my face, nothing else, or no other cause. i know, kind of weird sounding, but true. He said Keppra wasnt approved for this type but he wanted to try it to see if it worked so I was willing to trust his judgement. My start out dose was 500 mg twice a day for 2 weeks, 1000 mg twice a day for two weeks, 1500 mg twice a day forever. the first few days i felt like a zombie. i would be trying to work, and would feel like i was floating on clouds. i felt like a lost soul i was tired constantly. its a feelings like i haven't seen anyone else post on here. i felt like i was trapped inside of my own body. i dont have the same type of disorder this medication is prescribed for, so i was wanting to know if anyone else had felt if they were trapped. i felt like i had been spacy, almost as if i had a few glasses of wine to drink, someone please let me know. Also Now that the medication is at 3000 mg a day all i want to do is sleep. im in college and used to going to sleep at 2 in the morning. now i go to bed at 8 pm, and wake up at 10 am (class starts at 10:30) its crazy my sleep needs now) someone please help!

 
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