hi. I've been trying to find a support group that deals with seizures and hopefully i've found the right spot.
A short version of my dad's story is that last year he had an upper GI bleed (due to liver cirrhosis) and he lost alot blood. When they stopped the bleeding, they had to reroute the blood flow around his liver, this caused his ammonia to build up because his liver wasn't getting as much blood flow to filter this ammonia out of his system. His ammonia got so high that he went to into a coma and began seizing.....
NOW, whenever his ammonia level gets elevated he has seizures....not just 1 seizure and we're good...he has back to back grand mal seizures and they do not stop without medical intervention.
My struggle is that he feels fabulous despite having had a stroke, coma, cirrhosis, hep c, etc. He has mild confusion but says he feels awesome. I hire people to stay with him about 9-10 hours a day. But this past round of seizure episodes, (2 days ago) caught us off guard because we had gone 6 months without one. How does one live and make plans with seizures like this?
Recently was weaned off of VImpat 200mg/2x a day
THEN, Last night he was found seizing alone. Paramedics couldn't stop them with all their meds. ER tried for an hour and they finally calmed down.
AMmonia was 104.