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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: gf issue
Hi blerand, First, I don't consider epilepsy a disease. I have always felt that it is a...More
Posted by saxofone1
Reply: New Diagnosis of Epilepsy/teenager
Hi njayjay, Wow, I had my 1st seizure 9 days before I turned 14. Forty years ago but I...More
Posted by saxofone1
Reply: Seizures and Anger?
Hi jessica, I had problems with mood swings back in the 70s when in high school. I was...More
Posted by saxofone1
Reply: confused and scared
Hi Misti, Yes, the way the meds are making your daughter feel is quite common. Sounds...More
Posted by saxofone1
Reply: confused and scared
Hi Candi, Thanks for sharing that info with Misti. Whatever was troubling my comp has...More
Posted by saxofone1
Reply: confused and scared
Hi and welcome to the family The fact the the tests results came back "normal" is...More
Posted by saxofone1
Reply: Surgery
Hi Tim, sounds to me like it is time for an adjustment/change in meds. sorry to hear...More
Posted by saxofone1
Reply: Surgery
Hi Tim, How long have you been on that dosage? It could be that your body has simply...More
Posted by saxofone1
Reply: Surgery
Hi Tim, An EMU is an Epilepsy Monitoring Unit. As Dana said you are connected to an EEG...More
Posted by saxofone1
Reply: Surgery
HI CANDI!!!! Dana and I were wondering if all was okay with you. It's funny that...More
Posted by saxofone1

For more information, visit the Duke Health Epilepsy Center