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Michael Z.’s epilepsy story sounds familiar

michaelzMichael Z.’s story may sound familiar to many of you. I know it did to me. He has experienced many of the same things I have, from being diagnosed in his late teens, to “busting himself up” during a seizure, to having trouble with side effects. Read his story and think of him this coming Friday as he heads to have an EEG.

Michael Z.’s Story

My seizures first began in the late 1980’s – early 90’s, when I was in my late teens. I would get this buzzing feeling in my head and nearly pass out. I later learned that these sensations were auras that warned me a seizure was coming on, but didn’t think much of it at the time.

Then came the night of 8-19-1993 when I experienced a grand mal seizure while playing a video game at home. One minute I was alert and aware, next thing I knew I was on the floor convulsing with medics standing over me prepping me for the ambulance trip to the ER. I had injuries from the fall, as I busted my upper lip pretty good, but nothing much more than that.

Finding the right meds

After a day or two was discharged from the hospital. I was put on Dilantin with a starting dose of 300 mgs daily but the seizures kept breaking through so I was put on 400 mgs daily but the sluggishness it caused was too severe. So I was on an alternating dose for the next 15 years or so.

In ’94 I had an EEG and hated it but no real conclusive results came of that. I also had an MRI in ’96 and it indicated dilated ventricles in the brain.  To this day I haven’t found any connection or info on how that effects/causes my epilepsy.

To complicate matters

In 2007 I was also diagnosed with Asperger syndrome (a mild form of autism) so that may explain the dilated ventricles who knows?

I was recently hospitalized for pneumonia & my neurologist informed me that, after 20 years she wanted me off the Dilantin due to liver problems with the enzymes being too high. She put me on 500 mgs Keppra twice a day recently. Already the side effects are getting to me.

Coming Up

I have an EEG coming up on Friday, June 21st  as an outpatient procedure and truth be told I’m worried about breakthrough seizures already.

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3 Responses

  1. Michael Zell
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    I was wondering if anyone with experience would know wether or not my neurologist might want to change my scheduled outpatient EEG to an inpatient 24 hour EEG? Since switching medication after a recent hospitalization I have had at least one grand mal seizure resulting in minor facial injury on Saturday afternoon & had a minor seizure in bed Friday night. Since then I’ve been having terrible complex focal seizures the last couple of days that have really been causing me a lot of discomfort & it takes a lot of muscle strain/over correcting just for me to sit upright in a chair.At first I thought it was just due to the pneumonia but that has since cleared up so I suspect that it’s due to my medication not yet being at a therapeutic level since my neurologist took me off the keppra & started me on lamictal XR last Thursday.

  2. Carol sickerman
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    Michael, plese don’t worry about the ambulatory EEG. The worst part is you look like a martian when you walk out. i wore a turban to cover the wires and get the rest under my coat (last winter).. If you think you’ll feel uncomfortable, find a male acceptable way to cover the wires. A baseball cap won’t fit.

    The more you worry, the worse it is going to be for you. What will happen, will happen.

  3. Michael Zell
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    I got through it and it came back normal,the hyperventilation test nearly got me though. Now I have a CT scan to go through on Monday morning and while I’ve had plenty of them in the past I’m dreading the results after seeing the results of the 2008 CT scan at my neurologist’s office following my EEG on 6-21-13.