My second EEG results came back. Seventeen recorded seizures, and not one of them was epileptic. So it’s doubly confirmed. Psychogenic Non-Epileptic Seizures (or as it’s called in other countries, Non-Epileptic Attack Disorder).
I’m not sure what I was hoping for with this. I didn’t want epilepsy, so it’s good news. But I did, because it meant treatment. Something tangible that can be fixed. Medicine that can be prescribed to treat it and keep it under control. Instead, I’ve lost control over my own body, and there isn’t much out there for me to do to fix that.
I’m going back to that PNES specialist therapist in a few weeks. I guess he got yelled at or something by the neurologist that confirmed my diagnosis. He never should have just let me go to never be seen again. Apparently there’s an intense program he puts you through. I didn’t get that.
I felt hopeless. Alone. Immensely depressed. Nothing got me excited anymore. Not even reading a book! I couldn’t get through a book anymore. Even Facebook lost its charm. I didn’t really want to talk to anyone. Everything annoyed me. All I could see was that I gave up. Me, a deaf person who fought her way through school to get A’s and B’s. Who fought hard for life when medically I shouldn’t have survived. Even at my most depressed point in high school, I never gave up. I always looked forward to tomorrow. Tomorrow offered hope.
But not this time. Tomorrow was uncertain. Not in the sense of suicide, I would never, ever do such an act. More in the sense of is this it? Am I destined to live a life of seizures that are out of my control? Am I doomed to be confined to the safety of my couch because it’s unpredictable?
I was prescribed Lamictal. It can be used as an anti-seizure medication, but that’s not what its purpose is for me. It’s to lessen anxiety and stabilize my mood so I can stay in control of my body. I’ve noticed a difference in the two weeks I’ve been taking it so far. Slowly, but surely, I’ve went from just depressed and given up on myself to telling myself that I can do this. It’s not the end of the world, even though it feels like it. I’m not aggravated by people, I’m treating my husband better even though I was in denial about that. I’m sorry, Chris.
I’m not saying it’s easy at all. It’s still extremely difficult to get up and be a go-getter like I used to be before the seizures. But I’ll have the tiniest of sparks in me, and I’ll grab it and do whatever the spark is telling me to do. For example, yesterday, I had a spark that told me I should work out. So without thinking, I popped in a workout video and did 30 minutes. Thinking back on it, I probably should have waited until my husband was home in case I seized, but then I would have lost that spark. I think also the spark is a sure sign that eventually I’ll be okay.
I think I’m not fighting the diagnosis anymore. I’m building a future for myself. I’m going back to school to change careers, and I’m working hard on getting all that together for Spring semester. I’m willing to see a therapist. I don’t force myself to do anything anymore, because I’ve noticed that it triggers something in me. I create to-do lists that don’t necessarily have to be done TODAY, RIGHT NOW. I do it far enough ahead of time that I don’t have to worry about urgency of something.
I also think the Lamictal is working, because I’m getting up in the morning at a decent hour. I don’t feel drained or find it difficult to crawl out of bed. I don’t just sit there on the couch, watching the day go by, unable to get up to do the simplest of things like the dishes. Instead of forcing activities on me, I let it come to me. I let that little spark decide for me.
For the first time since the car accident, I don’t feel so hopeless anymore.