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Womanhood and Epilepsy: I Didn't Get the Memo

Last updated: April 2023

What's the introduction you hear when you "become a woman"? How does it feel?

You've become a woman. Realistically speaking, it is the most paramount level of pain, discomfort, and confusing feelings. With everything that occurs with this life-changing experience of getting your first period, it's an adventure to enter this new phase inside our changing bodies.

But, with all being said and done, I didn't know there was any connection between menstruation and seizures. Of course, I learned very late about a thing called "catamenial epilepsy."

What is catamenial epilepsy?

I recently learned about catamenial epilepsy, and as I read about it, it sounded something like this: Catamenial epilepsy is associated with menstrual cycles in women. As young girls, our hormones change, which can be scary, confusing, and awkward. When we speak about "the change," it's ultimately about puberty and experiencing our first period. This impacts our pain tolerance, mood swings, fatigue, depression, bloating, and more.

Then add in being a young woman with epilepsy: medications, emotional and mental stress, social impacts, and all of the above symptoms.

Okay. I'm glad I got all of that out of the way.

Getting so sick during my period

Here's the thing, when I was younger, I didn't exactly get the memo when it came to "becoming a woman." What this might look or feel like. But then it happened. And suddenly I had a love for ice cream and oversized long-sleeve sweaters and I'm sick for 4 days, looking for relief from Midol.

I was sick every month.

As years progressed and the world became faster, it became clear that being sick and a woman seemed normal. Part of what's to be expected. However, as I was getting older, one short day changed everything. (Mind you, my memory is horrifying. But my feelings and experience are straightforward.).

Feeling a seizure come on

It was a Saturday, and frankly, I just wanted to be on my lonesome with my secret stash of Lays potato chips, an oversized sweater, and of course, the entertainment of watching classic and brand-new episodes of the Simpsons. Yes, Disney+ is my forever.

I was also anxiety-ridden. I noticed this. Then...

I'm having an episode. It comes with my right eye, which flashes, and it continues with the mix of everything on my right side not connecting, but I can hear you and you're scared. And I blacked out. It was happening. A seizure.

I'm okay, I promise. But when I have episodes, the feeling of tightness goes through my right eye, flashing lights, and slight headaches. I'd had a seizure, but it didn't make sense.

What caused it?

I had been careful, sleeping through the night. I had been eating great meals. And I was doing everything I was always told I needed to do to keep my seizures under control.

But the warning signs of me preparing to have a seizure were different. They involved cramps and nervousness. It happened. I had a seizure...

I call it "sleeping beauty." I wake up and don't remember much. But I know a couple of things: I'm sore, tired, and my body and emotional balance hurt. Yep, that's how I know.

Painful seizure recovery

Days go by, and the sensation of pain leaves thanks to some comfort, time, medication, and sleep. But I still deal with the semi-pain of the aftermath of a seizure.

And as someone who goes through anxiety, depression, and of course, paranoia, I have to reassure myself another seizure isn't going to happen. It's the conversation where I say to myself, "I'm too sore, tired, and annoyed to have a seizure."

But I'm scared.

My period can cause seizures?

I didn't get the memo. I didn't get a book, a video chat, or anything to prepare me for this. I had to experience this myself – having my period and having a seizure. And I had to research it to explain it to myself.

I already deal with a very expensive combo of coping with epilepsy, a side order of anxiety and depression, plus a bonus and surprise order of womanhood. I get scared more and more. It's forever going to be exhausting.

Writing this, I'm even more exhausted and nervous. I haven't gotten much sleep, and I'm beyond miserable. I'm shocked and upset that no one told me about this. I had to experience this on my own to find out.

I'm getting older, and I'll still figuring it out. I ask the obvious question, "Will I ever get the memo? Or do I have to ask Google?" It's that or be embarrassed to ask a professional the questions they leave unanswered.

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