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.