Severe myoclonus when lying down. Epilepsy? Diagnosis?

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)

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

@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

@santosha
Thanks for posting that link Chris.
Jake

My pleasure @jakedduck1 !

@mikemcbroom I am curious if you’ve found out anything further on your wife’s condition. I have been having these also and am fairly sure mine is related to something in my neck as I have had ACDF surgery. My NeuroSurgeon says it is not related. These “myoclonic seizures” are getting worse and are going from just at nighttime to the days also.

Dear @mikemcbroom

My husband, who has Alzheimer's, had a myoclonic spasm/ jerk "storm"about two months ago. They were happening at some part of his body almost every minute. We went to the ER because I thought they were either small seizures or related to them. ( He had had a significant, verified seizure in February.) The neurologists there did an ER EEG, kept him overnight for an overnight EEG, and did a multi day EEG later that week. No seizures were detected. They diagnosed Myoclonus, told me that it is hard to treat, often requiring a mixture of medicines. They prescribed Brivacetacam ( because my husband had not reacted well to Keppra) and I said I would talk to my neurologist. He, in turn, confirmed that nothing pointed to seizure activity, so the myoclonus was separate. In our case it may be being triggered by brain changes from the Alzheimer's. He said often myoclonus is not treated unless it is disrupting a person's life. But he echoed the recommendation of Brivacetacam for preventing another seizure like the one in Feb. I decided to wait since I did not want to subject my husband to loss of quality of life to prevent a seizure that might or might not occur. And the myoclonus calmed down to an acceptable level. Time passed. A month ago, he had another seizure and about three weeks later another myoclonus storm. This time the discomfort was so high that it was waking him up. I could not let that go on. I put him on the Brivacetacam. In the first week, it definitely calmed the myoclonus. It also made him very sleepy and weak. We reduced the starting dosage ( made easier by the fact that we got the liquid form of this medication). It has been two weeks since we started and in the last two days he seems to be having less of the side effects of the med. I know that I will continue trying to treat the myoclonus, because I hate to see him in discomfort and also, he needs his sleep. But I hope that the side effects subside to a reasonable level.

With respect to your situation, I understand the desire to know the cause. When my family has faced unusual and serious symptoms, I have relied on US News ratings of the top medical centers for each of those specific speciality areas, and we have gone to one of the top three centers listed. (For example, in the case of Gastroenterology, we went to Mayo and had a diagnostic breakthrough. Other centers said my brother needed to have his colon removed and Mayo found a way to move forward without that.) Some of the potential causes of your wife's problem may have a solution (.e.g. medications issues). Some may remain mysterious or may not be addressable ( as in our case). In those cases, you may want to treat the symptom anyway. That is what I am doing-- with the Brivacetacam but also with Melatonin to help him stay asleep.

I hope something in the above is helpful.
Wishing you all the best.

Good Morning @mikemcbroom
It's been a while since you started this discussion. I truly hope things have moved forward in some way since then.
Are you still looking for answers? I'd love to know how your wife is doing.
Chris

Hi @tsweeks
Also curious to know how you are doing — are you still experiencing myoclonic seizures?
I'd love to hear how you've been doing.
Chris

@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