Epilepsy Diary

Stacy has been diligent in taking her meds and supplements. She is also eating well. She does not always get to bed on time for regular sleep though.

For the last three days in a row now, she has had a single, strong jerk in the morning. Yesterday and today, they were strong enough to bring her from a standing position to the ground (they were not atonic seizures/drop attacks). Unfortunately, today, she was holding a glass cup which shattered on the tile floor and she cut her hand up in addition to smacking her knee smartly on the floor. The cuts were not deep/serious enough to require a trip to the ER/hospital (thank goodness!).

Well, since her last visit to the ER, Stacy bumped her intake of Dilantin from 300mg at night to include an additional 100mg in the morning (for a total of 400mg per day). Even though she had done very well on 300mg Dilantin for a long time before she Jan/Feb this year, her blood work at the ER indicated that the 300mg was not achieving a therapeutic dose. I’m not sure if this is an indication that she missed a pill or two (she has been very diligent, so if so, it was not intentional) or an indication that her metabolism changed (thanks to the GARD diet).

She started complaining about dizzyness, tingling in the extremeties (hands, feet), arms and legs that felt like lead weights, and unsteady hands (enough to affect her handwriting). So we had a blood test done to measure the Dilantin in her blood and sure enough, it was way too high (30 versus the 10-20 range that is optimal).

So, after some discussions with her doctor, she is going to drop back to 300mg Dilantin per day (200mg at night and 100mg in the morning). She is also going to revert her diet back to the simple carbohydrate elimination diet that she was using when she was seizure free for 4 years. We think that the GARD diet that she is currently on may be having a too strong of a ketogenic affect – disrupting her menstrual cycle and possibly contributing to hormonal problems (which may be responsible for triggering her latest seizures).

Stacy strongly believes that her latest round of seizures are related to her menstrual cycle, so we are going to monitor how things go for a month and if the diet change helps her cycle to normalize. If not, she may try taking birth control pills to help regulate it.