Epilepsy Diary

Hey guys! in my Time to go back to work blog, I said I would explain some things about my epilepsy.

Well let’s start at the beginning.

When I was 10, I started noticing parts of my day missing. I would come home and tell my mom about them, apparently this happened a few times, I don’t remember that, I only vividly remember once. I was in the 4th grade, and my classmates and I were lined up waiting to go to lunch. We had behaved well that day, and got to line up early and talk. Next thing I know. I am in the cafeteria. My friend was talking to me, I looked down, my pizza boat had a bite taken out of it. My chocolate milk box was opened all the way, and some milk was on my tray like I had spilled it. I looked around, and asked my friend how I got there. He looked at me like I was crazy, and told me I came down with the rest of them, to which I told him I don’t remember that at all.

When I told my mom that, she realized this wasn’t just some thing I was making up, that we need to go see what’s going on. I remember all the crazy testing, X-rays, blood tests, EEGs, MRIs, EKGs, CAT Scans. We were referred to a pediatric neurologist at the University of Michigan Hospital, in Ann Arbor. That is when I was diagnosed with Epilepsy, and I was diagnosed with Absence Seizures. (see link below)

It wasn’t until I was 16, that we were able to finally capture a seizure on an EEG.We found that they come from my temporal lobes, (Complex Partial) and have something called mirror imaging. Mirror imaging is when one lobe mimics another. The seizure activity starts in my right temporal lobe, and then my left starts to mimic exactly what the other side is doing. That immediately took brain surgery off of the option list. There weren’t many options other than surgery at the time. A new treatment, VNS, a device placed under your collarbone with an electrode that can send a burst of energy to your brain to stop or lessen the severity of a seizure, was still in development. So I all I had was my medication to help.

Now you hear more about the correlation between the menstrual cycle, and seizure activity in women, I had noticed that when I was a teenager. Every month I saw an increase in seizures, and would miss school for a while, sometimes a week at a time. There are other factors that can raise the chances of you having a seizure. Stress, lack of sleep, bad diet, anxiety, even getting sick, and of course missing your meds, can all make you have seizures.

Over the past 3 years, my seizures have changed. I started having Nocturnal Grand-Mal seizures, and another type, which my neurologist didn’t really explain what kind they are, I think they may be absence seizures, Where I wake up staring at the ceiling, I feel like I have been staring for a long time, but I don’t remember falling asleep at all when that happens.

I have to have another EEG soon, when the quarantine is over. To see what is going on, and make sure there isn’t anything wrong with my brain, other than what is already going on. This is something that can be so annoying. Not the testing or anything, that is normal, and doesn’t bug me. It is the issue of being limited in what I can do. I am not supposed to drive after having seizures, I have to go 6 months seizure free. I have had issues with my medication recently giving me vertigo and making me sick, to the extent where I have to go to the ER, and that makes me miss work, for at least one day.

See the links below for more Information on epilepsy if you’re interested!

https://www.epilepsy.com/learn/types-seizures/absence-seizures

https://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures

https://www.webmd.com/epilepsy/complex-partial-seizure#1

https://vnstherapy.com/learn-more/how-it-works

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