Question: I developed myoclonus after DBS surgery for dystonia 18 months ago. Initially it was just an over exaggerated startle response. Despite increasing doses of clonazepram it has continued progressing and friends are now expressing comments at just how violent the full body spasms have become. I regularly fall backwards during episodes hitting myself on furniture Etc and have frequently come close to falling backwards headfirst down the stairs. During episodes I now dribble and can make vocal sounds. If on a chair it tips backwards and I have been jerked out of an armchair and bed. Whilst holding onto a 21lb weight walker with the brakes on it just tips over with me. Recently friends have commented they witnessed prior to the jerking I appeared vacant, then my eyes rolled back in my head and I went stiff none of which I was aware of. One friend stated its looked identical to what she witnesses when her niece who has epilepsy. Prior to the op the surgeon warned me some people can be left with seizures afterwards which can be controlled with drugs. My question is are the symptoms my friends witnessed normal for myoclonus or could I be having seizures. I am currently on 1mg clonazepram twice a day which has not helped. I am having high number of falls up to thirty a month which I find scary and is starting to affect my confidence in going out alone. As well as the jerking episodes my dystonia causes me falls too due to motor control problems with my legs. I am ashamed to admit I am struggling with fear of falling so reluctant to ask for help but it is starting to get me down.
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