Wednesday, July 29, 2009

Re: [epilepsy] My history of Epilepsy

 

Welcome to the group Pastor Groth.  We're an understanding group of people.  Feel free to ask any questions.  You said that the Lord works in mysterious ways.  Yeah, I know that's a pure fact.  God is mysterious! 
 
Just a little about me.... I'm 25 years old.  I was diagnosed with temporal lobe epilepsy when I was 9 (summer of 93).  I'm been on many different meds (too many to list).  I had a left temporal lobectomy Nov 12, 08.  I've been seizure-free since the surgery.  I got my driver's license last month and I bought a car last week.  Surgery has worked for me (so far).  I'm still on extreme AED dosages.  I'm on the same dose of Keppra that you're on.... 3000mg daily.  I also take 700mg of Tegretol daily.
 
Speaking of God being mysterious..... When life gets to be too much for me to deal with, I like to write poetry. Well, I just wanted to share one with you...
 
Who knows what tomorrow brings?
Who knows what tomorrow brings?
This world is always changing.
There is so much to do,
And so little time.
We are blinded by constant troubles.
The Glory of God is everywhere,
If we would just open our eyes.
Remember that God is in control.
He has a purpose for every problem.
Let's not focus on the chaos.
Let's fix our eyes on God's everlasting love.
This world is not our home.
Day by day we wait.
Who knows what tomorrow brings?
 
 
 
Welcome and God bless you,
 
Tristin Seagraves :)

--- On Tue, 7/28/09, Pastor Joseph Groth <pastorjwgroth@yahoo.com> wrote:

From: Pastor Joseph Groth <pastorjwgroth@yahoo.com>
Subject: [epilepsy] My history of Epilepsy
To: epilepsy@yahoogroups.com
Date: Tuesday, July 28, 2009, 5:22 PM

 

 

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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