← Return to Severe myoclonus when lying down. Epilepsy? Diagnosis?

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

@memoriestomoments Good Morning
Welcome to the Epilepsy & Seizures group — I believe this is your first post here. Thank you for sharing your experience with us!
I'm truly sorry for what you and your husband have been going through. I can relate on a personal level, as my mother also has Alzheimer's — it runs in her family as well.
Epilepsy is known to affect some people in the later stages of Alzheimer's. And as @jakedduck1 has well noted, roughly 50% of EEGs in people with epilepsy come back normal — so a clean EEG does not rule out seizure activity entirely. I experienced this myself, only receiving my epilepsy diagnosis many decades after my seizures began.
Has your husband ever been seen by a neurologist with expertise in epilepsy? That specialized perspective might be valuable.
Wishing you and your husband all the very best 💜
Chris

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Replies to "@memoriestomoments Good Morning Welcome to the Epilepsy & Seizures group — I believe this is your..."

@santosha Thank you, Chris. Your suggestion made me look, and it turns out that our neurologist is an epileptologist who did advanced epilepsy training at Stanford post residency. We have gone into hospice for my husband, but treating the myoclonus will be a central part of this, since it is essential to the primary goal of keeping him comfortable.

Best,

Taia