Hi, I'm Jen pt 2

 So, the "in my sleep, febrile" seizures ended at 14 years old. I remember that last one because I seemed to wake up in the middle of it (at least that's what I thought at the time) - I was being carried on a stretcher and halfway down the steps in our home at the time when I woke up. I remember feeling so cold and I couldn't get my teeth to stop chattering. I had also had a friend spending the night who woke up to me "making a weird noise" apparently, so she went into my little sister's room. Ugh. Embarrassing... but in hindsight, those seizures were "the highlight" of my epilepsy.

In the fall of being in my early 20's, I was running on little sleep and high stress. I had a non-profit animal rescue that was in the middle of going back and forth with the town of one of our foster volunteers about pet limit laws. I was driving back and forth between college to attend meetings and such. We even had a lawyer involved.

It was October and we had just left a town meeting about the subject with a bunch of volunteers and local supporters. I was walking with our volunteer/board member who was at the heart of the matter, our lawyer, a couple other volunteers, and my friend, JM (who was at the time coincidentally & thankfully an ER nurse). I remember walking with them... and mid-sentence, I dropped face-first into the sidewalk in a grand mal seizure. I left behind a huge blood-stained circle on the sidewalk...

(Ugh, I'm having a hard time writing this without getting super upset...)

Everything changed then.

I lost my license, which meant I had to leave my rented condo and move back onto campus into whatever space was open (so, with a bunch of strangers). My condo roommate was less than understanding. I mean, I get she was left in a bad position with no roommate/half the rent, but it's not like I had a choice in the situation and at least she was healthy/ normal/ could drive herself around. Some friends seemed more sympathetic to her than me too (which is bullsh*t because, again, not by choice), so there was some more tension/ loss of support. No more driving back and forth for the rescue or to see friends closer to home... or anywhere really without asking for a ride, which made me feel like a burden. I had to start meds that made me feel funky and often fall asleep in class (so I constantly felt like I looked like some slacker). Ugh and walking into the first class after that seizure. It was a class with a guy I had just gone on our first date with a few days before the seizure happened. I wore sunglasses because I had stitches in my eyebrow after nearly blowing out my eye socket. Embarrassment is an understatement.

These seizures were all mid-sentence, sudden and I always went face-first. Over a couple months, I noticed they were only happening once a month and I was waking up from them spotting/getting my period. My doctors then wanted me to come off birth control, but I insisted on staying on it - if I was going to seize around my period, I'd rather know when it was coming up instead of just waiting around for whenever it felt like showing up as it did off birth control.

- One seizure was at a New Year celebration when a really cute guy was talking to me - I woke up with my best friend in the ambulance with me.

- Another I was trying on clothes I think and collapsed in the dressing room - my poor sister was with me while my mom was in another store.

- Another was at a rescue event I was helping at and I fell in between two cafeteria tables that I just kept bashing my face and the back of my head in between them until I was pulled away from them (broke two of my teeth and cut my lip open with that one).

- I was talking with family friends who were around the table and I was in the kitchen. We were talking about my seizures and they asked something like "Really? They're mid-sentence" And I said "Yea, mid-sentence." ... and fell into the open fridge seizing. I even remember the conversation and opening the fridge door.

- My last one was at the job I got where I was able to live on-site (no driving!). I think a few months had passed since my last seizure. My parents were up helping to clean up the garden beds outside and I fell into a mulch pile seizing.

I had tried a variety of medications over those months, but they never stopped them.

One medication made me so sleepy. I lived where I worked, thankfully, because I would wake up right in time to work at 7am and work until 11am or so. Then, I would head back into my apartment to nap until my afternoon shift around 4pm until 7pm. Then I'd go back into my apartment, eat a bit and sleep around 8pm until morning rounds again the next day on that medication. I guess sleepy is really an understatement. I was barely awake.

Another medication I was tried on just made me feel off. Some days I was super confused or felt "foggy". I would also randomly drop things when I was on that medication. Spoons or pens were no big deal. Knives (when cutting food or for opening things at work) was another thing though. It was as if my hand would just stop working for a second. There were also times I could look around and (I've always had a hard time describing this) rather than how you glance around in one smooth motion, my vision would shutter - think of looking at a panoramic photo vs a series of photo bursts lined up. That's likely the closest I can get to accurately describing what it felt like looking around and it actually hurt my brain. Rage/ anger was also a side effect I wasn't aware of (sorry for any attitudes, co-workers! I didn't know that was an aspect).

Both of these medications I remember being described as options to try because they are "safe for women" ... as in safe to be on if you got pregnant. At 22 or 23, frustrated with meds that weren't working, depressed about epilepsy and what it was doing to my life, I remember thinking that medical decision-making based on a possible pregnancy seemed nuts. I wasn't pregnant. I didn't plan on being pregnant. I didn't want to be pregnant (and I was also on birth control). Let's just find something that works for me and not worry about a non-existent baby. 

My mental health was a joke and that's all I'm really capable of saying about that right now. Though I'll forever be thankful for family willing to drive me wherever whenever (and even still, I felt like a burden), friends who were supportive, the people who continued to love me even with what me/ my epilepsy put them through and an on-site apartment at a job with wonderful, understanding people that magically manifested in my life during that time. 

Without medication assisting while I was on it, these seizures stopped as randomly as they started and after a year grand mal seizure-free, I was able to get my license back.