When I was first diagnosed with epilepsy, it was so hard for me to find a good doctor, especially when you don’t know anyone with seizures who can give you recommendations. I was interviewing a bunch of neurologists from San Diego and all the way up to Orange County. My mom gets a recommendation from my Grandpa’s doctor. My Grandpa had lung cancer that spread to his brain. So that doctor recommended this new epilepsy doctor at the Hoag hospital. His name. Dr. David Millett.
Apparently, he was was like an “epilepsy doctor celebrity”. That’s the best I can describe it. When we met him on our first appointment he says “You don’t need to get another opinion”. Why does he need to convince us that we should trust him ? But whatever, I needed someone ASAP.
First we begin testing to see if we could find something that is causing my seizures. The MRIS, EEGS, PT/CAT Scan, etc. There was nothing we can find. No groundbreaking results. So, the trial and error of medications began.
The more I learn about myself and others in the epilepsy community groups, it is sometimes overwhelming to learn that:
1. there are so many different types of seizures and 2. how it affects so many people’s lives.
On this, I am trying to talk about what epilepsy is about, what it does and how I can inspire people that have this condition to not be afraid to talk about it. So I want to remind you that while I am educating myself about epilepsy and doing things I can control, there are many other people that have different experiences and they also need your support. So be aware and research it yo self and contact me if you want to learn more of how you can help the cause!
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.
When is comes to medication, all my neurologists and I repeat the same conversation. Some may have different methods, but this example is the typical talk track.
ME: I had a breakthrough seizure in April.
DOC: We will start you on Keppra XR at 500mg at bedtime, as we think this is an effective anti-convulsant with the least amount of side-effects.
ME: I had another nocturnal seizure in August.
DOC: Ok, lets increase your dosage from 500mg to 1000mg in Keppra XR.
ME: I had another seizure……