Hello All, I first of all would like to thank everyone here for all your posts, you have all been an inspiration to me in how you deal with this disorder, and the questions you ask, the answers you find etc.. I love not feeling so alone in this. The closest person to me on this chat is around 350+ miles away, so I appreciate knowing there are so many others out there that know what I am going through, and are willing to give their opinions, share their experiences and ask for help. Lets keep it going.
My question today is: Has anyone done an Ambulatory EEG, or an at home EEG machine that you have for several days to record the movements, PNES etc that you experience to compare it to a journal of what is happening during those time frames.
I was recently at my Neuro's office about 2 weeks ago, and I had asked her about the seizure like activity that I experience. Some days I many not have any, some days it is just a few back to back, the worst I have had was 42 within three hours. These PNES as they like to call it, kick my butt. My last EEG in office I did have 2 times where I started convulsing and even knocked the electrodes off my head. But my results came back normal somehow. When she heard that an average day when they get started can be around 12-20 times back to back, and usually occur during the times of when I go to bed, and when I wake up in the morning. Now when these happen, I have not figured out a trigger, other than a dream or mind racing, but that is not the same every time. These seizures as I call them usually hit out of the blue, no warning really except for my body doing its regular exercise/gymnastic routine while I sleep. These times involve Myoclonic jerks, Dystonia, flailing around of arms and legs, curling of harms/hands, and legs/feet, its hard to breathe, my face and neck are being pulled in different directions, I do backbends, curls, sit ups, twists and turns (usually in different directions throughout the body), arms and legs hold up in the air, absolutely no way of communicating except for small grunts of pain sometimes to my husband so that he can wake up and pull me back on the bed before I fall, or he finds me on the floor. I do have to laugh at my dismount of bed though. It is not usually graceful, and can be a very slow due to the dystonia and jerking that goes on in my body which slowly inches it's way off the bed and onto my head on the floor. I am trying to perfect that movement, but have not had much luck yet. ha ha
Personally it is easier to deal with these things in bed than when they happen in my small shower, it is not easy to help me out until my body says loosens up and allows me to be pulled up and out.
These seizures take everything out of me, my energy, my thinking is messed up until I can reboot in a way, moving on my own is a joke, and talking is not possible for quite a while, and it leaves me in pain throughout my body because of the muscles tensing and tightening, as well as in my head because my brain is being shaken so much.
I would love to know if anyone else has done this test, and what your findings were, what it was like, and if your doc was able to provide anything to help you.
I hate to even say this, but I hope that my brain and body decide to throw a party and give her a show through this machine so that she can see what is going on with me during these episodes. Thus far, no medication tried has been able to help, so any suggestions of that would be most helpful to try as well.
Thank you all, have a fabulous day, and God bless you and your families for dealing with this fun disorder.