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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: loss of a loved one
Condolences to your family and you. Hugs, angieMore
Posted by saxofone1
Reply: Adult Epilepsy Support Groups — Updated
Hi phylis, For about 5 yrs, I've been a participant with the Sunrise Hospital monthly...More
Posted by saxofone1
Reply: Epilepsy Misconceptions in Jamaica
Hi Tashi, I understand the struggles you're facing. Many people of the Black community...More
Posted by saxofone1
Reply: my son
Hi Kel, This must be very upsetting and scary for you. And for your son. Please let...More
Posted by saxofone1
Reply: my son
Hi Kel, Withdrawal sucks!!!! That's the politest way to say it. It definitely plays on...More
Posted by saxofone1
Reply: my son
Hi and welcome, So sorry to hear about your son's and the families battle. Finding...More
Posted by saxofone1
Reply: Validated...keep your chin up :0)
Hi Chaddy, Happy to hear that you responded to "1st time". Hope you hand around and...More
Posted by saxofone1
Reply: Validated...keep your chin up :0)
Hi Chaddy, That is some storm you have been though!! I understand your frustration...More
Posted by saxofone1
Reply: Seizures for the first time
Hi and welcome, Candi has shared my thoughts. I guess that about 90% of my EEGs, MRIs,...More
Posted by saxofone1
Reply: Has Anyone Heard of Sleeping Seizures?
Hi Candi, I don't recall ever hearing about Tim. Thanks for the info. I will pass this...More
Posted by saxofone1

For more information, visit the Duke Health Epilepsy Center