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saxofone1

Joined: 03/20/2011
My Story:
My epilepsy began March 27, 1975. It was spring break from the 8th grade. I was 9 days short of being 14.

My initial EEGs were negative though seizures had been witnessed by family, friends, and doctors. Because the seizures looked like petit mal(aka absence) I was put on Zarontin. When seizure activity did show, the docs said they were not the petit mal but psychomotor(now known as complex partial.) "We have to change her meds."

The early seizures lasted only about 8-10 seconds. Sensation...seizure...headache/tired. As time passed, the seizures became more motorized. I was picking at my clothes, smacking my lips, rubbing my hands or tapping my foot.

Time to fast forward. Over the years the seizures worsened. The auras disappeared. My seizures were being followed by a period of confusion. I was aware that I was confused. Later I had no recall of my confusion. I knew a seizure had passed because of a loss of time. It was like starting at block a and suddenly finding myself at block e. No recall of blocks b, c,or d. No recall of changing clothes, taking phone messages, crossing streets,etc.

Let's fast forward again. I had a partial right lobectomy in '02. The grids were placed on the morning of my 41st birthday. Um, what a gift! From '03- to sometime in 07, I was seizure free.

For unkown reasons, the seizures decided to do an encore performance in August '07. I had made a move from Mpls to Vegas in March '07. Who knows, maybe it was the altitude or my plate slipped. Hmmm?

Though seizure activity was happening again, I have no regrets about my lobectomy in '02. Before the surgery, I was experiencing 12-20 seizures a month. Now I'm dealing with 1 about every 3.5 months. I have no reason to complain about the one that still lingers. My daily meds have been cut down from 7000mgs a day to 3500mgs/day. Great progress.

I am currently happy here in Vegas. I have a great support group at a local hosp. Plus the support of all of you!!!

angie, raidergirl79@yahoo.com

Latest Activity

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Reply: Don't be ignorant about life
Hi workwitit, Thanks for your thoughts. My mother tried her best to shelter me from...More
Posted by saxofone1
Reply: Hello, totally new to this
Hi missist, Welcome to our community. In addition to Candi's thoughts/suggestions, I...More
Posted by saxofone1
Reply: Complications
Hey Meg, You will find many useful books in the library but think about starting you...More
Posted by saxofone1
Reply: Just an update
Wish you and the kids the best. angieMore
Posted by saxofone1
Reply: It's been awhile!!
Hi augio, THAT'S GREAT NEWS!!!!!!!!!!!! Thanks for the update. It is wonderful to...More
Posted by saxofone1
Reply: Complications
Hi Meg, I enjoyed my Monday off. But as usual, I missed the kids. Yesterday was a...More
Posted by saxofone1
Reply: Epileptic or Not?
Hi cheesecakes, Welcome to the group. Please keep us updated on your son's progress in...More
Posted by saxofone1
Reply: Complications
Hi Meg, Sounds like your seizures are way more complex than mine were. You are stronger...More
Posted by saxofone1
Reply: Complications
Hang in there, ladies, Meg, my first seizures lasted about 8 secs followed by a short...More
Posted by saxofone1
Reply: At the breaking point and need some answers
My vistitor stopped making his calls when I was in my 40s. I don't recall if it was...More
Posted by saxofone1

For more information, visit the Duke Health Epilepsy Center