**Note: I’m currently working on a piece about where the fuck I’ve been, but it’s been a hot minute and a lot has gone on, so it’s gonna take a while and will probably be a two-parter. You can follow me on Instagram @porcelainautumn_ to get more up to date life updates.**
So if you know me personally, or if you have read some of my other pieces, you should be well aware by now that I have epilepsy, specifically Generalized Epilepsy. Did you know that there were different types of epilepsy?; cause I sure as fuck didn’t before I was diagnosed with it.
So what generalized epilepsy means, in a nutshell, is that instead of having a seizure in one part of your brain, my WHOLE brain has a seizure. Also, it’s genetic, which we’ve now learned thanks to some DNA tests and connecting with long lost family that it comes from my mother’s father’s side.
I also have different types of seizures. I, of course, have gran mal seizures; these are the seizures that everyone thinks of when they hear the word seizure. I often refer to it as “going all exorcist and shit”. Except weirdly, I don’t thrash, my body goes completely stiff, and I make a weird moaning sound (sadly, it’s not a fun moaning sound). I don’t have them too often as they’re pretty well controlled under medication, but holy mother of fuck do they leave me sore for approximately a week. It feels like I worked out really intensely, but with nothing to show for it. For these types of seizures, I was put on the generic of Lamictal.
The other type of seizures I have are simple partial seizures. These seizures are not really well known about or understood by the general population, and at first, I wasn’t even sure I was having seizures. When they started getting longer (~10-20 minutes) and more often though, I realized that something wasn’t right.
While I’m having a SPS seizure, I’m completely aware, I can see, hear, smell, reach out and touch someone and even speak; the way you can tell I’m having the seizure if you see my head kind of cock (lol cock) to one side, I stare off into space, I have a hard time recalling words, and I just look like I’m off in la-la land. It’s incredibly weird to go through, and I’m sure even weirder to witness. For these types of seizures, I was prescribed the generic of Keppra, and I have almost maxed out of the daily dosage. I can only go up on my dosage one more time and then I have to explore other options. That prospect terrifies me.
So what’s incredibly strange about my epilepsy is that I went undiagnosed until I was 26 and I went, to my knowledge, ~14 years between gran mal seizures. And then once I was diagnosed, my body was like, “Oh yeah! I do have epilepsy! We have some catching up to do!” And ever since then, it’s been a physical, mental, and emotional roller coaster.
Having to find a neurologist period, then having to find the right neurologist feels like the journey to find your significant other. I have had a doctor who was meh, I had a doctor who was a fucking ass hole, and my current neurologist is stuck with me for the rest of her career. She is incredibly supportive of my school goals, my lifestyle goals, my quality of life, and actually takes into account that I’m a fucking woman with a menstrual cycle when considering my meds. If she ever leaves her current practice, I will follow her wherever she goes.
There have been periods where I’ve lost a big chunk of my independence because I wasn’t able to drive, which is devastating. The law in Texas states that after you have a seizure, you cannot drive (on orders from your doctor) for 3 months. This has happened to me twice already and I’m hoping for the best, but I’m sure there will be other periods in my life that I won’t be able to drive.
The last time I wasn’t able to drive was when I had a gran mal seizure while I was driving, which I talked about in a previous piece (shameless plug here), drove into oncoming traffic and hit a light pole; when I came to and realized what had happened, there were only two thoughts on my mind: oh my fucking god, I wrecked my husband’s car; and are they going to revoke my license?
I almost didn’t go to the hospital because I was afraid of the medical records getting back to my doctor, who would revoke my license, but I’m glad I did because I ended up having another gran mal seizure in the ER and they had to pump me full of meds. All I remember after the accident is getting to the ER, starting to become more coherent, joking around with the cop who witnessed the accident, and the paramedics, and then nothing. Just bits and pieces throughout the night, and waking up in the morning. It was a traumatic experience, to say the least.
Since then, it’s been a battle to get some sort of normalcy back to my life. I experienced a lot of pain after the accident, so that had to be dealt with. I also changed from the generic of Lamictal to the generic of Topamax. The transition was excruciating on my body: Topamax gives you this really foggy brain feeling, and getting used to that, and so I had to find the right supplement for better brain function. And of course, getting used to any medication that messes with the brain will make you sleep what feels like 18 hours a day. But like, whyyyy?
Most recently, I’m transitioning off of Topamax back onto Lamictal (the generics). And it’s been great! Just kidding. I’m immunocompromised at the worst time ever. I’m tired. I’m grumpy as hell. I also happen to be hormonal, which, by the way, is a trigger for seizures. Yay menstrual cycle!
My triggers, if you’re wondering, are not the typical triggers that you hear about: flashing lights, loud noises, etc. For me, it’s predominantly stress and hormones, which, again, YAY!
So this is what my epilepsy journey has looked like thus far. If you have epilepsy, is your journey similar or different?
If you don’t have epilepsy, did you learn something new today? And if so, what was it?
Thank you for getting this far with me. I know it was a lengthy piece but I felt compelled to speak my truth about my illness. It’s poorly researched and not well understood, and the best way to make people aware is to teach them myself. The burden is hard to bare, but in the end, I can say that I did the best I could and that hopefully, I made a tiny dent of happiness in an otherwise horrifying illness.
Once again, thank you. I am grateful for you.