Joseph,
Welcome to our group. I had grand mal szs when I was diagnosed
(DX) 47 years ago but they changed about 15 years ago to more
like complex partials. My daughters tell me that my brain is
scrambled for about 2 days. My daughters now around 49, 51 and 53.
I have been on Dilantin and Phenabarb for over 20 years. My last
sz was 2 years ago and before that it was 4 years. I have been
very fortunate.
I have learned a lot in this group. Hope you do also.
Millie
> Thanks for letting me join. I'm Joseph and I'm 46. I've had Epilepsy
> since I was just 2 years old(1965). I was doing alright until I hit my
> 20's.. I began having unrecognized seizures. I never have a warning sign
> of a seizure coming on. I had a complex/negastic type seizure
> in 1983. I found out later that I had became immuned to phenobarbital
> that I had taken since the epilepsy started. I was taken off medicine for
> 5 years to clear my system. In 1988, I had some motor and grandmal
> seizures. And was put back on medicine Dilatin.
> For the next 5 years I was doing alright, having a couple seizures a
> month. In 1993, I started having daily seizures on the job and at home. I
> lost my job and was put on disability. This put me in a very deep
> depression, causing more seizures to occur. By 1998, I was having as many
> as 7 seizures a day. I opted for brain surgery. It took 3+ years of
> medical testing before I could get the surgery. On October 31, 2001 I had
> the 5 hour brain surgery. Was put on a 2 year recovery period and remained
> on medicine. I went 4 1/2 years seizure free. I had a stroke in Dec. 2005
> which caused my seizures to return. I went through having the seizures
> more often again. In May 2008, I had a 2nd surgery. This time I chose the
> VNS surgery. VNS stands for Vegus Nerve Stimulator. I had the surgery May
> 15th 2008 and on June 2nd 2008 My VNS was activated. It is set to activate
> in every 3minutes for 30 second intervals. When a seizure is about to take
> place, the stimulator
> activates and stops the seizure immediately. I wear a magnet on my wrist
> as a back up device. I have had only 6 seizures squeak through since my
> stimulator was activated. My wife has been able to swipe the magnet over
> the stimulator when she noticed the seizure and stop the seizure
> immediately. Since May 31st 2008, I have not been in the hospital.
> This has reduced a lot of stress of me and my wife. I'm partially
> paralyzed from a colon surgery I had in 2004 and walk with 2 canes.
> I also use a power chair for places that require a lot of standing or
> walking. This is a bit stressful, but easier to deal with now that my
> seizures can be controled. I take Keppra 750mg 4 a day and Lamictal 100mg
> 4 a day. I must say that the Lord works in mysterious
> ways. Every time I have a medical problem He has been there to help me
> every time. Looking forward to getting to know you all better.
> God Bless!!!!
> Pastor Joseph Groth
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