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Joined: 08/22/2010
My Story:
Well my name is John and my first seizures started back in 1988. Then in July of 1988 after working a 12 hour shift I came home and woke up in the morning with the back of my head bleeding and laying face down on the bathroom floor. I have no idea on how I got upstairs to the bathroom or even ended up on the floor. That is when I finally went to the Dr. and he sent me to a nuerologist.

I went through all the tests,cat scans,eeg's ,mri's,blood tests. After the final MRI I was advised by my Dr. to report to the hospital the very next morning for surgery as the MRI revealed a tumor on my brain. After surgery I was in the ICU for 11 days til they regulated my meds,Dilantin and phenobarbital at that time. 150 mg of phenobarbital and 500 mg of Dilantin daily. As soon as I was released from the hospital I had to go through 6 weeks of radiation treatment every day for about 15 minutes.

So here I thought that everything was done and no more passing out from Grand Mal seizures. Boy was I wrong, the seizures kept reoccuring for a few years til they just about stopped. For the first 2 years I slept like a rock and did not have a single dream in those 2 years,I forgot things that I did when I was younger and was very forgetfull of current things.

I raised my 3 children on my own during this twin girls that were 3 years old and my son who was one. They kept me fighting through this ,if it were not for them I would have given up. There Mother left me about a year after the surgery,as it was to much for her to go through and she took my children away from me. I ended up fighting her in court and was granted physical custody and my dream kids came home with there dad.

During this time with my children now at home I was able to enroll them in Head Start and volunteered every day in school with them. I was the chair person of the Policy Council in our County and won the Volunteer of the Year Award while there.

Then came little league,which was right across the street from my house, I coached there for 6 years and then after my kids moved on up to other sports I continued volunteering for another 12 years tajing care of the field and painting, cleaning up and so on up until 2 years ago when I finally had to leave. It just got to much for me.

So 2009 it was time to do my house , First putting up a retaining wall,then a 5 foot fence,adding top soil to the backyard and finally I just finished off all the siding on my house, got my garden going,built a small pond with goldfish and guppies in it and drilled some holes through rocks and have a nice little water feature for the birds to drink out of.

Now I am trying different meds as my new neurologist has taken me off phenytoin and started me on Keppra 1500mg daily and 180 mg phenobarbital daily. SO as of now I am just waiting to see if this helps and I hope it does.

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For more information, visit the Duke Health Epilepsy Center