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……
What is an EEG Test?
So Brain Cells are known to “communicate” with each other through electrical impulses. An electroencephalogram (EEG) is a test used to evaluate the electrical activity in the brain. So I guess, an EEG can help detect potential problems associated with this activity. This definition makes sense to me, but I’ve been trying to figure out why and what is causing my brain cells to misfire all over the place?
WHEN: October 2015 – 48 HOURS STRAIGHT
WHY: Doctor’s Orders
I let my doctor order a 48 hour EEG test to see if there were any abnormal activities going on, specifically when I am sleeping.
So it’s been about 5 months since my last post. I have been lagging but I’ve been super busy with more of these nocturnal seizures! I’ve had about 4 more nocturnal seizures since October 2015. Total lifetime seizures in these last 2 years is 9. I wish I could go back to the time when I was seizure free for 9 months, that was great. I will try and fill you in as much as I can on this Seizure Plague that hit September 2015.
October. . .September. . . November. . . January. . . February
In my last post, I mentioned the seizure I had by myself before a 4am flight. Now after that episode, I was up to 2,000 Keppra XR only taken at bedtime. Then another episode hit in November, (that was before another early morning flight – coincidence? After that one, my Doctor wanted to check in and discuss medication options.
I like to solve things, puzzles, games – they’ve been my favorite. Yet, I am still trying to figure my “brain game” out. I should mention that I quit the Birth Control Pill in August (2015). I’ve been on it for 8 years, it never caused huge side effects – just the normal ” hormonal crazy”. I was pretty regular. The reason why I got of it was…. NO – I wasn’t trying to get pregnant. Nope. Nope. Not there yet. I got off of it because I was trying to eliminate reasons why I developed epilepsy all of a sudden – back to my puzzle solving. So my boyfriend and I decided to test it and get off it and maybe that would reduce the seizures. But since I got off of the birth control pills, they have been getting worse and happening more frequently.