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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

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Reply: Haven't been on here in a looooong time
I'm cool with wearing purple for ep awareness. People who know me did kid me about it but...More
Posted by saxofone1
Reply: happy halloween
Thanks Nancy, I wish you, your family, and friends the same. angieMore
Posted by saxofone1
Reply: Haven't been on here in a looooong time
Hi Candi, About ep awareness, last month My and I stumbled across some rings that have...More
Posted by saxofone1
Reply: DGS had seizure today at school
Hi Candy and Hooty, So sorry to hear about these mishaps. Somtime back in the 80s, a...More
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Reply: Haven't been on here in a looooong time
Hi Nan, YAHOO about the elimination of Vimpat!!! Tell your husband there are no hard...More
Posted by saxofone1
Reply: Brain surgery for Epilepsy?
Hi Ash, Good to hear from you. I didn't experience any unsettling pain. The headwrap...More
Posted by saxofone1
Reply: DGS had seizure today at school
Hi hooty, Good to hear from you. I too would like to know if your son joins us. I'm...More
Posted by saxofone1
Reply: Haven't been on here in a looooong time
Hi Nanwake,' Welcome back and nice to meet you. Most of us have probably had the "5...More
Posted by saxofone1
Reply: How can you tell the difference between Generic an...
Hi nan, There is definitely a difference in the price!! It didn't bother me that I...More
Posted by saxofone1
Reply: Brain surgery for Epilepsy?
Still with us, Ash? Keep asking questions. This includes all your docs, nurses,...More
Posted by saxofone1

For more information, visit the Duke Health Epilepsy Center