Tonic upward stares occurring daily
Our 37 year old son has epilepsy.
In August of 2018 he had a seizure and fell, resulting in a TBI. Although he had regained his mobility and ability to do all daily care on his own he was still having seizures. In July of 2019 he had an unfortunate depth electrode study done at Mass General hospital resulting in a hemorrhage.
He has not regained mobility, now has 2 VPI shunts to manage his cerebral pressures and experiences daily periods of tonic upward stares lasting from an hour to longer than 14 hours.
No one at Mass General can explain what these are.
They resemble seizures except they do not show up on an EEG and cannot be broken with the usual rescue medications.
This has been going on for 11 months!
Has anyone else had a similar experience or familiarity with someone who has?