My Wife has had severe myoclonus for a year when laying down.

Posted by mikemcbroom @mikemcbroom, Apr 12 11:22am

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.

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Chris Gautier OR Santosha | @santosha | Apr 12 8:47pm

Hi @mikemcbroom
I can well understand your anguish. In 2017 I started to have some more serious health issues and went to several doctors (psychiatrist, GPs, neurologists). But the correct diagnosis of epilepsy just came out in 2019, learning I have had epilepsy for a long period (since I was a teenager, I am 53 years old now).
The full understanding of my epilepsy I got in 2021 when I was recommended to an epileptologist, who has been treating me well. Visiting an epileptologist is something that I recommend much for all those who are struggling with epilepsy or the possibility of having epilepsy. I could share the contact of my epileptologist, but he is in São Paulo Brazil, a bit too far away from you. Hope others can help you.
Wishing you and your wife all the best!
Chris (@santosha)

Chris Gautier OR Santosha | @santosha | Apr 13 7:41am

Good Morning @mikemcbroom
This webinar on EMU of the Epilepsy Foundation might interest you.

Perhaps an EMU stay is something recommended to your wife to understand better what happens with her. But do it with the support of an epileptologist.
Kind regards,
Chris (@santosha)

Leonard | @jakedduck1 | Apr 13 1:33pm

@mikemcbroom
I'm sorry to hear about your wife’s episodes of myoclonus. I've had Epilepsy for almost 60 so I often wonder if symptoms could be seizure related. I know there are numerous causes of myoclonus including medication. However, cluster myoclonic seizures come to mind but that type of seizure usually only last a fraction of a second to a couple seconds. I wonder if it could be ok myoclonic status Epilepticus. If trying to rule out epilepsy an Epileptologist as @santosha mentioned would be the most qualified in diagnosing epilepsy.
Perhaps the Neurologist who suggested these episodes were being faked was thinking they were Psychogenic Non-Epileptic Seizures (PNES) which are
psychologically, or emotionally induced episodes that mimic Epileptic seizures. Being monitored in an Epilepsy Center while hooked up to an EEG and being videoed is the best way to rule out psychogenic, non-epilepsy type seizures (and other types or confirming seizure activity.)
has your wife had an EEG or brain MRI? Unfortunately, there are still neurologists who diagnose patients who have a normal EEG as having psychogenic seizures. Approximately 50% of EEG’s in patients with epilepsy are interpreted as normal.
you also mentioned these episodes happening while your wife was asleep, Any seizure can be nocturnal.
In case you're interested here is a list of https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Take care,
Jake