Posted 14 September 2011 - 05:31 PM
I am a 62 year old male. I was diagnosed with Parkinson's Disease about 5 years ago and had bi-lateral DBS implants about 3 years ago. Only the electrode in the left side of my brain was turned on. After tweaking the parameters for about a year, my final voltage was set at 4.9 volts. The right side of my brain has not been turned on yet but may have to be shortly. Prior to the DBS, I was diagnosed with REM BD and put on Clonazepam. I leave the DBS on all the time since the tremors simply become too violent and I can't do anything when I turn the system off. About a year after the BDS was implanted, I started having what appeared to be seizures at night only. These seizures would last from 1 to 20 minutes in duration and affect both sides of my body. They looked like the typical Grand Mal seizure. I would scream, jump out of bed, shake, hit things (I even broke a bone) and then become unresponsive. This was finally recorded at the hospital during a sleep study. My sleep doctor thought it might be epilepsy so I saw an epilepsy specialist and had a Long Term Video EEG performed. They recorded a few events but came to the conclusion that I did not have epilepsy. The night-time episodes got worse over the next year. Different medications were tried with no success. A year later the EEG was repeated and this time several episodes were captured on the video. The trigger appeared to be a sharp small noise and then I would begin screaming and try to jump out of bed. I also became nonresponsive, had little strength in my hands after I came out of it and my blood pressure soared. Even though Epilepsy was still not diagnosed I was put on 3000 mg Keppra XR (2 tablets taken at night and two tablets taken in the morning). The episodes immediately stopped. Whenever I would start to decrease the Keppra, the episodes would immediately return. Prior to the second EEG, I was also put on a VPAP machine. I was diagnosed with Complex Sleep Apnea. During these episodes I could clearly see my breathing rate doubling during the seizures. Some nights I would have 2 or 3 of these episodes in a single night. My wife and I sleep in separate rooms for safety reasons and my mattress is on the floor. Everything in thje room is padded to help prevent me from injuring myself. She would come in screaming and not know what to do while I was flopping around, other than keep me in the bed, which on some nights proved to be a real challenge. Needless to say, I was always wasted the next day and had to stay in bed. I was told that frontal lobe seizures were missed about 70% of the time with this Long Term Video EEG Monitoring test. Since the Keppra XR was obviously controlling these episodes, that is where we left it. My question for you is - Is this really Epilepsy or something else? And what might have caused it? Has you seen this before? What else can be done? And, of course, can my wife ever return to our bedroom at night? She is really afraid of me even though the seizures now appear to be under control. Thank you very much.