Q. After DBS, I am getting violent myoclonus attack. Is it due to Clonazepam?

Hi doctor,

After deep brain stimulation surgery for generalized dystonia 18 months ago, I have developed mild startle myoclonus a fortnight later and was prescribed 0.5 mg Clonazepam. Since being on Clonazepam, I developed mild anxiety and my myoclonus continued to worsen. Now, I have violent full body jerks that cause me to fall over backwards every day. I am now on 1 mg Clonazepam in the morning and evening. After six months of Clonazepam and just after increasing my dose to 0.5 mg twice a day, I developed pressure of speech and the longer I have been on the drug the worse my myoclonus and anxiety has become. I am now in a vicious circle as the myoclonus episodes are so violent and I fall backwards heavily despite whatever I hold onto. I have become anxious at having an episode and the actual anxiety can trigger a myoclonus episode, although it also occurs when I feel safe such as sitting down, reading a book or chatting with friends. Six weeks ago, I was told to double the dose due to the high number of falls I was having during myoclonus episodes and since then I have developed mini-seizures and worsening of anxiety. My neurologist is referring me to a psychiatrist for cognitive behavioral therapy (CBT) for anxiety and now believes anxiety is the likely cause of my myoclonus. I am happy to do this as I just want to overcome my fear of falling. My dystonia also is causing me to fall due to motor control problems with my legs. The behavior of my legs is very unpredictable, so without warning I regularly trip or my legs suddenly buckle, especially when tired or if I am on my feet for too long. Every drug I have been on since been diagnosed with dystonia has caused serious side effects, even at a low dose and I was told by one of the neurologists that my brain is very sensitive to the side effects of the drugs. The anxiety has only developed since being on the Clonazepam and seems to have worsened whenever the dose has been increased. Could Clonazepam cause anxiety? I have now lost my confidence to leave the house, even with my walker as during a myoclonus episode it is so vigorous the walker just tips over with me and I have episodes every day, but just do not know when one may occur. I have not walked as far as the end of my road about 100 meters for nearly five months now and even with friends still feel apprehensive when walking even a short distance with them. I have lost my confidence to stand in the kitchen to do chores in case I have an episode. I often crawl around on the floor, especially when tired as tiredness definitely increases the episodes and the higher dosage of Clonazepam makes me feel very tired by midday. I am also under stress at home as I am a carer of my 86 year old father who has Alzheimer's, although I get some support from social services with carers, who come in to get him up and his breakfast and then his evening meal. I am normally a very positive person, but right now I wonder if I will ever get better. I am keen to start CBT. But, I am still concerned that Clonazepam initiated the anxiety as a side effect and so would need to withdraw from the Clonazepam in order to recover properly. All I know for certain is I never had myoclonus before my deep brain stimulation (DBS) surgery. I never had anxiety or a single fall. Right now, I wish I never had DBS as it done little to help me physically and my quality of life right now is far worse. I am finding it hard to stay positive and feel very discouraged. Please help me.