Yesterday I had my appointment with the Epileptologist.
In my wildest dreams I was hoping that she could just look at me and spit out personalized information from what I have, why I had a seizure and the exact right treatment for me! I realize that this would most likely stay a dream and that the reality would be quite different, which it was.
She listened to me and took a lot of notes on her computer (their office is paper-free! HURRAY! Green!) and asked a lot of questions. When I explained the hospital diagnosis of 2003 meningitis = old calcifications in my brain = partial seizures = possible epilepsy, she was not on board with that "story" (as she called it). Even though that makes a lot of sense to me and rings true for me, I am grateful that she has ordered her own tests and is going to make her own diagnosis. That is what a 2nd opinion is for after all.
So, I will know more at the end of April. Yes, that's right, the last day of April to be exact.
In the meantime it seems to me that I will in the end have one of two scenarios.
1. 10% of people have one seizure in their lifetime. If mine was a one time event, unfortunately, in order to prove that I am not an epileptic (epilepsy defined as 2 or more seizures), I can't have another seizure in the next 2 years (or ever). Since I experienced the grand mal seizure (the worst one), the doctor needs to take measures to prevent that happening again, if it is a possibility, and so I must be on anti-seizure meds. I have learned that you can still have seizures while on meds, and if that happens the epilepsy diagnosis would be imminent. If after 2 years on the meds I have no seizure, than I will go off the medicine and be classified in that 10% of the population that has a 1 time seizure.
2. I go on anti-seizure meds and I have more seizures and my EEG and other tests results also indicate seizure activity and I am officially diagnosed with epilepsy. I have read that many who suffer from epilepsy can get to the point where they are off medicine when they are seizure-free for a period of time, usually 2 years.
The doctor has not spelled this out to me in this way....it's just my own deductions after reading a lot and having this appointment. I feel that whether I am officially diagnosed with epilepsy or not, I am living like I have it for the next 2 years. The only bit of hope the doctor gave me is if I remain seizure-free on my prescription for 3 months, she will give me driving privileges back. Driving again seems risky, but I have to tell myself that plenty of people recover from this and drive again. I look at that as a comforting thought in some ways and very scary in others. Never mind the drunks and the drug addicts out there, now we have the possible-seizures-occuring-peops out there too!
I have been trying to really concentrate on not having a seizure in other dangerous situations. I sit on the bench at the subway, and while the train pulls up I think to myself: "Ok, just stand up and make it from here to inside the train, it's just going to take about 2 seconds. You can do this, just stay standing, stay alert, DO NOT have a seizure right here in between this bench and those doors." or; "Alright, I just have about 40 steps to go down to get to the platform. Just concentrate on counting the steps and holding onto the rail, and do not pass out here or have a seizure, just walk safely down." In truth I don't think about it that much...I mean I have crossed lots of streets and ridden lots of subways in the past few weeks, but every once in a while it occurs to me that this is a possibility, and I try to survive.
I started my new medicine last night. I felt that familiar feeling this morning of wanting to stay in a deep sleep. It's VERY difficult to be roused in the morning, there is this element of weight behind the eyes on this medicine that makes it hard to roll out of bed. I will be on the low dose of this for 2 weeks, and I expect I will do pretty well. I am seriously dreading doubling it in 2 weeks though. Like, SERIOUSLY dreading it. For now I will just enjoy the first two weeks and hope for no other crazy side effects. I am ignoring the one listed as psychosis. Oh, PLEASE! I am already psychotic enough! Hey?!, maybe my own mentalness will actually counteract psychosis as a side effect! Here's hoping....