FAQ : Freaking Awesome Questions! (Part 1)

Thank you all for your questions! I am breaking this blog up into pieces so if your question isn’t answered here, fear not!

First I have to say that I’m not a medical doctor. However, the information here is based on over fifteen years of personal experiences, peer reviewed journals, medical conferences, discussions with doctors, material from nonprofit organizations, and interactions with others living with epilepsy. It’s basically as legit as anything needing a disclaimer can get.

I’ve decided to tackle the basics first. In the interest of time and space, I’m focusing on generalized tonic-clonic seizures and my personal experiences.

What should you do if someone has a seizure?

I get this question almost immediately after telling someone I have epilepsy. Which is good, because there are many myths.

•  First, don’t freak out. It’s probably scary and bizarre, but we’re not going to go Exorcist on you and spin our heads all the way around and projectile vomit split pea soup.
• Instead, ease the person to the floor and try to get them on their side. This prevents them from choking on spit, vomit, Flaming Hot Cheetos, etc. 
• Don't put anything in their mouth, especially your finger. And no spoons!
• Clear the area so the person is less likely to hit something. Likewise, remove glasses, ties, or anything that could harm them.
• You can put a pillow or blanket under their head if you want. I prefer 100% down pillows wrapped in 1200-thread-count Egyptian cotton cases.
• Call 911 if the seizure lasts more than five minutes, or if: the person is in water, is pregnant, or has other health conditions.
• Pat yourself on the back; you just helped someone!

What trigger warnings/labels exist and how are they defined?

This is a very interesting question that I want to look into more before answering. In brief,

I am aware of the Harding test, which tests if a video contains sequences of patterns or flashing images that could trigger seizures in those with photosensitive epilepsy (which I have). However, this test doesn’t seem to be required for anything, at least in America. I think the full answer to this will come in a later blog post.

Do you have warning signs/auras before having a seizure?

It’s hard to say. I don’t remember ever having any, but my mom said that once, right before I had a seizure, I said “oh no!” So it’s likely that I do have some indication of what’s to come, and I just don’t remember it later. Some people I know have “auras” before they have a seizure. This can manifest as glowing light, sounds, or other strange things. It’s likely auras contributed to previous assumptions about what epilepsy was (for example, some cultures interpreted auras as forms of divine communication). It’s likely I’ve had incredibly profound thoughts before a seizure (as Socrates claimed to have) but lack the memory needed to retain such magnificent insights. 

What activities are limited? Can you drive? Can you go to a rave? Do you wear a helmet? Do you have a dog?

Lots, no, no, no, no. Life with epilepsy, especially generalized, photosensitive epilepsy can range from pretty normal, to severely disabling. Luckily, I am on the pretty normal end. But there are still things I can’t do. The one that has the most impact on my life is driving. I moved across the country because of this. When I lived in San Diego, I felt extremely disabled. Don’t believe me? Try living in Southern California without a car, with a job, with a social life, and with doctor’s appointments. It doesn’t work. So, I moved to Boston, land of better public transportation. I have never felt more independent in my life. When I say I don’t drive, people don’t automatically assume I’ve had a DUI or am lazy. They usually say I’m lucky. Which I am. I don’t have to deal with massholes or be a carpool mom, and I never have to be the designated driver (it’s the little things really).

Additionally, I can’t go to clubs or raves. I’m more of a pub person so this works out fine. As does living in Boston. But…Vegas is one of my favorite place on Earth so that’s a bit of an issue.

I don’t wear a helmet on a regular basis. Even though I could just say it’s because my boyfriend rides a motorcycle.

I don’t have a service dog. But I heard service mini horses are a thing! Maybe by the time the waitlist is shorter I’ll have an apartment big enough for little Winston (that will be his name).

If I could eat one food for the rest of my life, what would it be?

Cheese. Always cheese.