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: Has Anyone Heard of Sleeping Seizures?
Good morning C and C, Hope your day is starting off with smiles. Candi, I understand...More
Posted by saxofone1
Reply: WebMD's 2014 Health Heroes
Hey, is Candi on the list? If not, she is my write-in for Health Heroes. She does so much...More
Posted by saxofone1
Reply: Has Anyone Heard of Sleeping Seizures?
Hi cuiling, I too wish I had had this support back in the 70s when my ep began. My mom...More
Posted by saxofone1
Reply: Has Anyone Heard of Sleeping Seizures?
Hi cuiling, Happy to be able to spread some support or lend my ears(this case eyes) to...More
Posted by saxofone1
Reply: Has Anyone Heard of Sleeping Seizures?
Hi cuilling, Welcome to the family. You are still the "normal" girl you were prior to...More
Posted by saxofone1
Reply: a questions
Hi again suzanne, My 1st seizure occurred shortly before I turned 14. I noticed...More
Posted by saxofone1
Reply: FRIENDSHIP DAY IS HERE AGAIN!!!!!
Thanks Nancy, I do feel that personal expierence has a lot to do with that "knowledge"...More
Posted by saxofone1
Reply: First Seizure 1 month ago...
Hi Tara, Stress is definitely one of the most popular triggers for seizure activity....More
Posted by saxofone1
Reply: First Seizure 1 month ago...
Hi tara, I didn't do any shaking but I certainly smacked my lips. Changed to my pjs if...More
Posted by saxofone1
Reply: First Seizure 1 month ago...
Hi Tara, So sorry about the long wait til you're able to see a nuero. Do your best not...More
Posted by saxofone1