1. < Epilepsy & Seizures
Profile picture for mikemcbroom

Severe myoclonus when lying down. Epilepsy? Diagnosis?

Posted by mikemcbroom @mikemcbroom, Apr 12, 2024

Starting a year ago my wife started having these violent full body jerks starting in the abdomen and radiating out. They were fairly controlled to the mid section. They have intensified over the year and they are now making her entire body seize. This is when she lays down only and will happen every 30 seconds or so for as long as an hour until she either gets up or falls asleep. I have witnessed a few when she is asleep also. I am wondering if it could have anything to do with her meds since she takes a good many different meds for various ailments. Is it epileptic? We have seen 3 neurologist now who have ranged from saying she was faking to just having no idea what the problem even is. Frustrated. Anybody know a really good diagnostic neurologist? We will travel wherever we need to. We are in Texas.

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

Profile picture for memoriestomoments
memoriestomoments | @memoriestomoments | 1 day ago
In reply to @santosha "@memoriestomoments Good Morning Welcome to the Epilepsy & Seizures group — I believe this is your..." + (show)
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

Jump to this post

@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

REPLY
1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 18 hours ago
In reply to @memoriestomoments "@santosha Thank you, Chris. Your suggestion made me look, and it turns out that our neurologist..." + (show)
Profile picture for memoriestomoments @memoriestomoments

@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

Jump to this post

@memoriestomoments
My pleasure Taia!
I'm happy to know that your husband's neurologist is also an epileptologist — you are in good hands for this part of the journey.
Keeping him comfortable is the most loving gift you can give right now!
Sending you much warmth and strength. I'm here if you ever need to talk.
Chris

REPLY
Please sign in or register to post a reply.