Pastor Groth,
Welcome to the group. I have complex partial seizures, which are the result
of a head injury 40 years ago when I was a baby. I used to not be able to
tell anybody when I had a seizure, but that is something I can do most of
the time now. I take Keppra and Neurontin for my seizures, but they are not
controlled. Stress and worrying about things seems to cause me to have the
ones I have now. I had surgery on the left temporal lobe in 2004, but after
about 9 months they started back again. They aren't as bad as they used to
be, but I still have them often enough to know about.I hope your VNS
helps.Take care and write anytime. If you need anything, write anytime.
Tammy
On Tue, Jul 28, 2009 at 5:22 PM, Pastor Joseph Groth <
pastorjwgroth@
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> 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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