The time spent with my grandma’s was incredible. Since neither of them live here full time the time we do share is so special. I was sad to see them go but do know that time flies by quickly and we will see each other again soon. My seizures coming off the Sabril has been awful. At times, I think my body is adjusting to the change but then a Gran Mal seizure will come out of no where and knock me to my knees. You may think all seizures are the same but they are not. The Gran Mal is the worse. They typically happen when I wake up. What starts with my arms frozen in the air stiff as a board turns into a gran mal where my body begins to violently shake, my breath is taken from me and I begin to breathe with severe difficulty, my eyes roll back into my head and I am gone for about 15 to 20 seconds. Thankfully they don’t last longer than that but those few seconds that my body it contorting and twisting I will be pretty much knocked out for the rest of the day. That means no fun for me. No physical therapy , no strolls, just sleeping and being exhausted all day.
So what are we doing to try and combat these awful, horrible, debilitating seizures? We have increased my oil. I am currently on only one pharma drug, which is an amazing feat in itself. The increase in my oil is showing slight improvement. The fact of the matter is that the Sabril and no longer having it in my body anymore has caused this increase in seizure activity. I am only ten days off the medication and we are hoping after one month things will normal out. Until then I am just going to keep praying that the seizures stay at bay and I ask if you are reading this to say a little prayer for me too! Without seizures I am doing great! Hoping to return to my active happy self really soon.
Love Malia
