While I was busy enjoying my twenties single and traveling for work; life happened in a most serendipitous way.
I met my husband in downtown Denver on the corner of 22nd and Market St while waiting for a cab after walking out of a REALLY bad date. A few very short months later we moved in together and an even shorter amount of time we became pregnant with our miracle child (Thank you NuvaRing).
T and I had been dating for a few months when I had my first recurrence. I was scrubbed into surgery, it was evening time but not late, and I remember feeling “funny”, like sort of faint but that I could power through it. And then I heard “Code Blue Main OR 1” over the hospital intercom.
“Oh my God! Did you guys call a code on me?!”
And then I was in the emergency room and my boyfriend (now he’s stuck with me for life 😁) was sitting in a chair distraught.
“Don’t worry babe. I’ll be fine. Sometimes this happens,” I say this (or something close to this) as the ER physician walks in.
“Amanda. Can you tell me your name?” <Yes. This is what he said. I swear to Christmas.
And then my memory is mush again.
I hit my head on the back table (which wouldn’t really mean much to you unless you know surgery lingo) before I hit the floor. Ok, because I want you to know what “the back table” is: on Greys Anatomy when they’re in surgery and someone passes a surgeon a tool- it comes from the back table (more or less… and we don’t call them tools, they’re instruments with very specific names). I caused them to have to set up a new back table with new instruments, delaying my patients surgery and causing him to endure longer anesthesia. Nobody had to explain this to me when I went back to work. I felt awful.
T convinced me to start a CBD regimen, which I followed very closely for a few months until SURPRISE we were pregnant.
I had a few absence seizures while pregnant, but starting an anti seizure medication while pregnant was not a good idea (so I was told).
And then I had a healthy baby boy. T and I decided that I should quit my job (the holidays, call hours, and stress level was too much for me). Aside from crippling post partum depression, which thankfully I got help for; everything was awesome for 2 years! No seizures 😊
We decided to have another baby and after a very complicated pregnancy, early delivery, and sleepless few months my epilepsy made a comeback tour. Times 100. I would wake up in the middle of the night and have anxiety about going back to sleep, convinced that if I did I would not wake back up. So I would stay awake until the morning when I felt safe enough to sleep because our nanny was with the kids.
T begged me to please go to a doctor. So I went to my PCP and she sent me to a seizure specialist. Dr F saved my life.
SUDEP. Sudden Unexpected Death in Epilepsy Patients. Dr F told me that I was at an incredibly high risk of SUDEP because my seizures weren’t controlled at all. I was having panic attacks that were quite possibly a real warning: you will die if you don’t get treated.
SUDEP is like SIDS for epilepsy patients: and please believe me when I say that in no way am I trying to be offensive to ANYONE by making this comparison. The CDC and Epilepsy Foundation both have great information about SUDEP https://www.cdc.gov/epilepsy/about/sudep/index.htm. https://www.epilepsy.com/learn/early-death-and-sudep/sudep
We started medication right away (like, I left the office with prescriptions and they were filled immediately).
And so now I’m here. Without a doubt, 100%, positively epileptic. Yes, I have epilepsy, specifically partial complex seizures of the temporal lobe. I have absence seizures quite frequently (sometimes several / day) and also tonic clonic seizures much less frequently (twice /month or so) and almost always at night.
I have epilepsy and identify as epileptic, but that isn’t WHO I am. I refuse to let epilepsy define my life, limit what I accomplish, or break my spirit.
So, that’s my story! Let’s talk epilepsy and life. I want to talk about my journey as a woman with epilepsy, being a mom, a wife, a successful business owner, and a lover of naps!