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Tonic upward gaze daily after fall from seizure. What is this?

Posted by fbutterw20 @fbutterw20, Jun 20, 2020

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?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

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Chris Gautier, Volunteer Mentor | @santosha | 5 hours ago
In reply to @fbutterw20 "Not really. Is referring us to the local Epilepsy neurosurgeon for his review of the test..." + (show)
Profile picture for fbutterw20 @fbutterw20

Not really.
Is referring us to the local Epilepsy neurosurgeon for his review of the test results and recommended course of action going forward.

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Hi @fbutterw20,
I came across the discussion you started back in 2020 through a recent post from another member. What your son went through — and your family alongside him — sounds incredibly difficult.
It has been a few years since you started this thread. How is your son doing today?
It would be nice to hear an update on your son's journey.
Chris

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