I’ve been having one seizure a week since January. It’s getting so depressing. I don’t have nocturnal grand mal seizures anymore, those stopped in November (don’t jinx me). These complex partial seizures are on fire and are so weird. I feel it coming like “The Weeknd” says. And when they come, I have aurora/hallucinations, my lips start smacking on the left side of my face, and I drool… A LOT.
I don’t know what to do anymore. The doctor is testing Lamicdol 200mg extended release twice a day, Keppra 500mg at night and Vimpat 250 twice a day. I feel like my Grandma who has to take all these pills in the AM/PM in those large pill cases. My poor boyfriend who has to remind me to take my medications so he doesn’t have to witness a seizure. He is the best thing in my life, hopefully I don’t scare him away with all this Sh*T happening to me. Epilepsy sucks. People get so uncomfortable with Epileptics. Saying “I’m Epileptic” is hard. When I started this blog, I wanted to raise awareness so people know about this disorder. I also want to connect with other adults that have seizures. Do people who have seizures like being called Epileptics? So much to learn about this disorder. I want to continue to engage with the Epilepsy community to increase my knowledge and also learn from other adults experiences. But what I can do now with myself to fight this. I’m open to anything….just please no more medications.
My body is rejecting these pills. If this continues in the next month, my doctor wants to put me in the hospital and monitor my brain for 5 days and cut out my medication to fully diagnose me (if there is data). I don’t know what’s going to happen. But to hear Brain Surgery freaks me out, but hey if it stops my seizures, I’ll consider it.
Here is my next course of actions to really fight this:
- The Whole 30/Grain Brain concepts: taking both of these rules to cut out sugar, gluten and carbs
- Meditation: I’ve tried this but I need to give this a second chance. How can I shut down this brain of mine? Taking Klonipins and Xanax is the only way to relax me.
- Stop stressing: I have no idea why I stress and overanalyze EVERYTHING. Anxiety is a mother effing bitch and runs in my family. This is my #1 trigger.
With these 3, I hope my next update will be “Seizure free for more than 1 week”.
Please pass my blog to any one you know that has seizures so I can open up the comment forum. I would love to hear anyone’s experiences with epilepsy or you have questions and don’t have epilepsy, feel free to post!