Journey Through Uncontrolled Epilepsy

Blog article written and provided by Lisa Schreiner.

I come from an Italian family, of twelve children. We had just come home from church, and I had my first tonic-clonic seizure by dropping in a clothes basket. That’s when my life with epilepsy began.  Once my parents took me to a doctor, they kept it a secret and hidden from my teachers in high school – which eventually they had to tell them in order for me to graduate. 

I finally got married and I had my first baby. Had my last tonic-clonic seizure during his birth. Epilepsy is very hard to handle for someone, not under control, and even harder for a woman.   

I had four children, and during my pregnancies, I dealt with many changes from hormones, to having seizures, to the effect meds had on the babies.  Due to the auras, I had to carry my babies on my left hand only because I experience my auras on my right hand, and I was afraid of dropping my babies. During one of my pregnancies, one of the seizure medications caused Thyroid Disease for both my baby and me – luckily, we caught it in time.

Surgery was tough, I knew what was going to happen but the first time I was expecting to be seizure-free – it never happened! Never go into surgery thinking you will be seizure free, go in just a decrease, I was depressed for months, until the next surgery. Multiple Subpial Transection I did four times. I got a big decrease of complex partial seizures.

I did the Adult Ketogenic diet in 1998 for one year. Helped some till I had to change meds.

2001 had Vagus Nerve Stimulator was put in. I had for 8 months caused sleep apnea and it was turned off but only turned on when I had a seizure, someone would swipe with the magnet to help.

My VNS was taken out the same year the DBS was put in. Had a DBS surgery March of 2022 but still waiting for some change but so far, no change at all.

No options on seizure meds again.  I got involved with the Epilepsy Foundation of Eastern Pennsylvania. I became a volunteer and mentor at Camp Achieve, Young Adult Retreat and I help with the Epilepsy Walk in Lehigh Valley.

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