EMU fun
I just spent a week in an EMU, it turned into a terrible experience. This is the third time, the second time with my current Dr. On my first visit, about 25 years ago in Denver, my doctor took my off all of my meds to get me to have a recordable seizure, thinking I would have a partial, then putting me back on my meds. It was a total failure, I had zero seizures on day one and two then multiple GTCs on day three, which were mostly unreadable due to all the movement and muscle contraction. I got my first VNS afterwards because they couldn't pinpoint where my seizures originated. The VNS (and second VNS) were worthless. Everyone is different, for me if was a fail. The seizures I had there were terrible, for the next six months I had terrible depression and almost never left my house.
My second stint in an EMU was in Texas about 10 years ago. My new doctor cut back, but didnt stop, my meds. Worked perfectly, got some excellent EEG readings and was recommended for rescission surgery. Even though the EEG readings were good they still didnt show the exact origin point so when I spoke with the surgeon his bold talk faded as we questioned him about the true chances of being able to stop my seizures or at least reduce my meds, so I passed on that.
Jump forward to today, I was just released after a terrible week. I told them not to stop my meds but they insisted they would be able to get readings for some partial seizures without me having a GTC. At first they planned on doing a SPECT scan but then said none were available. Day one-three, before I completely stopped my meds, I had way fewer seizures than normal but still had some significant partials, apparently they are starting deep in my brain so they didn't get a good view. Then they stopped the meds, I had total withdrawal symptoms, I didnt sleep for two nights and days but didnt have any seizures of note. Until yesterday.
Yesterday I had two massive seizures, my wife was traumatized. The EEGs were worthless and I feel like hell. Apparently, as I was looking at my iPad, I cried out and then went into a minute long full GTC. Not the worst seizure ever but my first GTC in around 15 years. This is when the true issues started. The EMU doc couldn't be bothered to come to my room and instead gave instructions over the phone. He told the nurse in charge to give me 2mg of ativan. My wife lost her mind! I take two 2mg of ativan to stop partial clusters so the idea that it would be enough to prevent a second seizure was rediculous, which my wife communicated to the staff. The doctor gave her a "There, there..." and felt like he had taken care of it.
Sure enough, a couple of minutes later I had a much bigger seizure. Finally the doctor decided that, perhaps, the 2mg of ativan wasn't enough and had them give me another 4mg followed by some phenobarbital, which stopped that seizure and any future TCs. I slept for the night and most of yesterday. I am fully back on my meds now and seem to be back to my "normal" seizures. Every muscle in my body hurts, my brain is foggy and I am unsteady on my feet but I am ok overall.
Very little information seems to have been gained, outside of the fact that they are even harder to pinpoint. I am going to get a 7T MRI coming up, possibly another PET scan. After that I will probably get a DBS and hope for the best.