October 30-2019 | Lauren Mabry
In 1994 when I was 9 years old I was diagnosed with Epilepsy with partial complex seizures after my mom witnessed a bizarre event where my arm jerked wildly and I fell to the ground. These events occurred multiple times and I underwent EEG testing, MRI, and all the tests came back normal. We tried a few anti-epileptic drugs and eventually found one that seemed to stop the episodes. Fast-forward a few years and I started to have breakthrough seizures…
This became the routine: find a drug that worked, maybe have a breakthrough seizure, up the dose, breakthrough, worry about having a breakthrough, or maybe go years and be fine.Things were challenging for me off and on throughout college as I seemed to be unable to stabilize my episodes for a year or two. And then I was fine for many years up until I was told I had to switch medication to get pregnant and so I did. I switched to the “safest’ medication and things seemed to be fine until about halfway through my pregnancy with my first son in 2015 and then things went haywire. I suffered these partial seizures every ten minutes. I hardly slept. I had to go on short term disability from my job at 5 months pregnant. I could barely speak. Eventually things semi-stabilized.
The goal was always to go back on Topamax, the drug I had been on before my pregnancies as it had been working, but when I finally switched back to this drug in November 2018 my body appeared to just reject it and instead I just started to have multiple episodes per day. My doctor. sent me to the hospital for inpatient video EEG monitoring. I was in the hospital for about 3.5 days where I had 87 episodes. I barely slept.
On the last day in the hospital my doctor took bloodwork for an autoimmune panel. It was the last thing we did while I was in the hospital and at the time I barely thought anything of it. At my follow-up appointment my neurologist told me I have autoimmune encephalitis – my brain is on fire. We did a round of prednisone steroids where I could literally feel my brain cooling down. Within a couple of days of being on the prednisone my seizures that I had experienced multiple times a day for 4 years stopped completely. We followed up the oral prednisone with IV Solu-Medrol and it’s now been 8 months and I’m still seizure free AND off my anti-epileptic medications.
Autoimmune encephalitis is still a very new disease in its infancy of research. It wasn’t even discovered and published until almost 12 years after my initial diagnosis of epilepsy. I saw neurologists in VA, at Johns Hopkins, and UCLA over the years and it wasn’t until I moved to Pittsburgh, PA that I was finally properly diagnosed. I don’t say this to place blame on any of my previous doctors, but to raise awareness that it can save your life to get a second or even third opinion about what is going on in your body.
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