Tony’s Story

At age 15 I had my first seizure.  It scared my poor parents half to death! I stopped breathing for a little and was turning shades of blue and green.  At the time it was referred to as a Grand Mal, a term no longer used. photo (1)

Sometimes I would have 1 seizure a year and sometimes many in a single month. I have been very fortunate.  I get what some call an aura, telltale signs that I will have a seizure.  It gives me time to get to a safe place. I’d get what I call pixellated vision.  Everything seems to be vibrating … almost like a migraine light sensitivity. Then numbness progressing through one side of my body … sometimes left, sometimes right.  

After many years and many medication changes (none of which were 100% effective) I went into the Epilepsy Monitoring Unit for continuous EEG and observation.  After that the doctors tried a few more medications,  Keppra caused mood changes. I am a laid back person, but it made me angry all the time. Lamictal gave me a rash.  Finally we tried Trileptal. 

I have been seizure free for over 2 years!! Since then I quit smoking, started running and ran my first marathon for the Epilepsy Therapy Project Team (Team ETP) in November of 2013.

Tony1 

Even if your treatment regimen is not effective now keep trying! Keep hoping! Things can always get better.

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4 comments

  1. My first seizure happened at 15, too. Lamictal gave me a rash, as well. Trileptal was no good, either. Keppra was the first medicine I tried and it proved not be very impressive. I’m a candidate for surgery now so I’ll see what happens. Great reading about your success! Good luck and continue to flourish!

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