Epilepsy - The Neverending Journey
The days leading up to today have been nearly perfect - a lunch date & nail day with my best friend, an impromptu birthday party for our Irish Twins with our closest family, & a date night with my husband followed by sunset watching in the desert.
The martinis hit me at the end of the date night though and I cried to my husband, I’m scared for tomorrow. I’m afraid of what will or will not happen.
I’m referring to today...day one in the hospital for my seizure induction. That’s right, today I am willingly stepping foot into the hospital to induce a seizure or seizures. I am withdrawing from all my medicines in hopes that my stay here will catch a “seizure in action.”
The 29 electrodes glued on my scalp are monitoring every brain wave, if and when the seizure hits - we are hoping the electrodes catch it all. This testing is called an EEG, “an electroencephalogram is a test used to evaluate the electrical activity in the brain. Brain cells communicate with each other through electrical impulses.” I’ve done these tests many times - take-home versions and also same-day testing in the neurology office. Never has an EEG caught anything for me at least on the test. Nothing ever happens, so this time we are taking matters into our own hands in hopes that the EEG can point my doctors in a direction.
As of now, we have no known cause for my Epilepsy, all my testing is normal and the only information they can go on is that I had two children (2017 & 2018) and started having seizures after giving birth to them.
It was a difficult decision to say yes to this type of testing, knowing I was willingly putting myself at risk to not only haves seizure, but the potential complications that can come with having one.
Some of the serious complications that can be caused by seizures:
- Emotional Distress
- Cognitive Decline
- SUDEP - sudden unexpected death in epilepsy
But here I am, checking in alone at the hospital during a Pandemic because I need answers…
I had no indication of what I was getting myself into. I guess there is a reason the doctors don’t tell you because if you actually knew you’d probably decline. I am strapped to the bed, can’t get up unless I buzz my nurse. Every bathroom break, I put on a green vest which is linked to a track in the ceiling. The nurse navigates me into the bathroom using this tool each time and stands a little closer than I’d like to watch me take bathroom breaks. Awkward yes. Safer then falling to the ground during a seizure, also yes. Blood work, IV set up, typical hospital admission protocol. My seizure meds are reduced 750 mg on that first night, the withdrawal headaches start and the only thing I could do to pass the time was watch a lot of bad television, eat some stale hospital cookies and keep on reading my murder novels. Not the staycation I envisioned.
The real fun begins as I am awoken at 3 am just for shits and giggles then again at 8 am so I can order my food before my three-hour-long neuro-psych evaluation. This was the scariest thing I endured during my entire stay, simply because I knew this woman was going to push me (and my brain) into overdrive mood. The first was a 300 bubble question test. A personality quiz followed by timed memory games, mathematical calculations (I paid someone to complete College Algebra for me soooo there’s that), more memory games, weird images that I had to decipher, building blocks, drawing images from memory, pegboards. Literally psychiatrist Mary Poppins kept pulling shit out of her bag and by the time she left, I was emotionally and physically exhausted. You’d think this was the perfect time to nap a few hours, but I was on sleep deprivation protocol so I could only sleep from 3am-7am. I was allotted a 15 minute walk (in the vest) around the hospital. The night was long and miserable, I am not sure how many times I cried or complained, BUT it was excessive.
Still no seizures, I want to go home so badly, but feel like I can’t because I came here for a reason and the answers haven’t come yet. The morning starts with strobe light testing, basically a series of flashing lights at different speeds which can often trigger a seizure. Round two of testing, hyperventilation. Basically you do some really awkward and heavy breathing on off for 6 mins. You get dry mouth and lightheaded, often triggering seizures. In my case, no such luck.
So it’s been three LONG days, I miss my family, I’ve run through all the “trigger testing,” no meds and still no seizures. At this point, I know that I will not be having a seizure, my intuition is telling me to leave and so I request my discharge and leave that evening.
I am slowly introducing new meds into my body in combo with my current ones as well as taking a benzodiazepine for the next 4 days. This helps to calm your brain and nerves and reduces the risk of me having a seizure after being discharged. This also makes me a pretty crappy mom because I basically am a walking zombie. My parents are staying with us to assist my husband in caring for the kiddos.
Kirby leaves for baseball season today, the Twitter news speculates he or someone in his family has Covid…that is not the case, the team was just nice enough to let him take care of his family before heading to Spring Training 2.0.
And now the real fun of Epilepsy begins again - no driving, supervision from my parents (who I love dearly, but let’s be real no 31 year old wants to be chaperoned 24*7), starting over again it feels like. Every seizure & every new med, this cycle begins again and then I am finally free and WHAM another episode and we start all over.
Epilepsy is not fun, I would never wish it upon anyone. It is common though, “1.2 percent of U.S. people have active epilepsy.” It is rarely talked about though, there is some stigma attached to it. My husband and I have actively tried to share our story though through charitable endeavors, social media & a podcast I co-host called The F Bomb Moms. I encourage everyone to learn seizure first aid protocol, it is vital that you know how to care for a loved one or a stranger as many of us don’t know when or where these episodes will occur.
For more information on Epilepsy, consider these resources.