she said it took her forever to really make sense of my situation, and actually gave me the same basic diagnosis that i got from my very first neurologist

but she said i have a rarer form of epilepsy where you don't see any epileptic activity at all whatsoever outside of seizures (that's why i did the video EEG in the first place, the regular EEG didn't show anything)

also it's apparently quite unusual that the area where my epilepsy is "located" is in the non-dominant half of the brain

also she has absolutely no idea why i spoke in english when i re-gained consciousness

Brains are so weird.

So you’ve been diagnosed with epilepsy. Great… what does that even mean?

“Epilepsy is a seizure disorder,” meaning you’re brain is more likely to send off mixed signals, than the next guy. But that’s alright, ‘cause I’m going to lay down the basics of what you need to know. Lol.

First, let’s get this straight: everyone is capable of having a seizure. You stick lil’ Timmy infront of a high speed strobe for long enough, sooner or later his brain will say “What the hell am I looking at? I can’t keep up!” And he’ll wind up on the floor.

Folks who have Epilepsy, like you and I, are no different. We see things, hear things, feel, and taste, just like any other human being. Okay? What I’m trying to get at here is you are not a freak of nature. You are not a mutant. Sadly, no, you do not have special powers to set objects aflame. (I know. That bummed me out too.) No! Instead, you’re just a normal dudelet - just chillin with the rest of the human race.

But what does makes us different, is that we have a lower seizure tolerance than most. That’s it. I know right? When you say it like that, it doesn’t sound like a big deal. That’s cause it isn’t. What is a big deal, are the seizures themselves, which I’ll get to in a hot minute.

So what IS a seizure? Great question. “… a sudden surge of electrical activity in the brain,” says The Epilepsy Foundation (epilepsy.com). Another, but equally scientific, definition describes it as, “the workers in your brain going, ‘What the actual fuck are we dealing with here?’ And proceeding to lose their shit,”

Pretty much, something - be it lights, lack of sleep, stress, booze, high pitched beeping, the sight of toast, whatever - will set off this seizure. This is called a Trigger. Triggers are things that our brains don’t generally enjoy. They tend to me things that could give a person headaches, or migraines; or make you feel out of sorts if you have to deal with them for too long. It is possible for some to “delay” a seizure, or even stave it off completely. Not everyone can do this though. I know someone who’s been able to prevent her seizures by sleeping with a foot on the floor. I (sometimes) can push one off if I feel one coming on, by either her being physically active or focusing on something solid, to remind myself im not floating away. But as I said, not everyone can do it. It depends on what type of seizures you have, and how in tune you are with your body. I only figured out my method after years of experimenting.

Anyway, so we got the basics. Back to….

Seizures! There are two major categories from which we have a variety of flavors.

There’s Focal and Generalized. The main difference between the two is how they start. Easy enough, right? (I’ve heard tell of a third classification “Unknown Onset”, but we’ll get into that later)

First we have Focal Onset: Focal seizures happen in specific parts of the brain - Sort of like a controlled mob.

Focal Onset Aware (aka Simple Partial): Im gonna be frank with you here. There are like a million types of Simple Partial Seizures. I probably won’t hit every kind, and I apologize if I’ve skipped someone out there. Ya know. My bad. Nonetheless I’ll do my best.

Simple Partials are pretty cool is that you are awake for them. Oh yeah. That’s right. You can have a seizure and be totally cognizant. These are the ones many refer to as “Auras”. Yeah, you know that “warning” you get before blacking out? That my friend is most likely a simple partial seizure. They’re like little seizures. Aw cute, right. No! They’re a pain in the ass! (Ehem. Apologies) anyway, as I said before, they can come in a whole bunch of types. To save time, I’m just going to give you a list of the effects:

Some people experience Deja Vu, out of body experiences, weird tastes in your mouth, (there’s emotional/psychological kinds) that’s make you have intense sorrow, or a sense of impending doom, others make you randomly filled with a god-like rage.

Others make your hands, fingers, toes, legs, etc twitch.

Some make it IMPOSSIBLE to find the right words/understand words/even read, and you suddenly feel illiterate and as if English is your second language despite being brought up in the US. (I’m not emotionally invested or anything).

Honestly, for these, you really should look it up yourself. I’ll be doing a separate post just for them, but nonetheless. It’s too important, and it’s one that truly is unique to the person.

Focal Onset Unaware (aka Complex Partial):

These are like simple partial seizures, but you’re NOT awake. Apparently many experience lip smacking during it. I wouldn’t know, because I’m out for the count. The one thing I do know is they can go into Generalized Seizures. This is not common however, that’s just the case for me.

MOVING RIGHT ALONG

Next we have Generalized: “Generalized” Seizure are seizures that effect both sides of your brain. *Imagine a stray cluster of teenage neurons are having a house party, and EVERYONE shows up.*. [Neurons are the little electric dudes that’s race around your head and make everything work/tell different parts of your brain what’s going on]

Tonic-Clonic (Motor): This is the big nasty one that people believe all seizures look like. The person loses consciousness, and convulses (shakes).

What It’s Like: They don’t hurt while it happens; but I’ll be honest with you, it can feel like you’ve been hit by a bus coming out of it. Basically, you’ve been clenching up and releasing muscles you didn’t even know you had over and over really really quickly. It’s like being super out of shape, and then made to do a triathlon athlete’s complete workout circuit in 2-5 minutes. At a weird angle, so you probably get dinged up along the way. So yeah. I’d describe it as waking up to limp noodles for tendons and joints, and fiery rocks for muscles. It’s sorta like how you’d imagine the hero of an action film would ACTUALLY feel like if the scenario were real.

Absence: these are super quick, but can happen MANY many times a day. They’re so quick that they’re almost impossible to notice. You stare for a few seconds, and snap out of it. I know, not very scary. What sucks is that you can lose time with them. So one second you’ll be lovin life, and suddenly, black, you forgot what you were saying, and a whole bunch of things that happened recently. This all comes back though, eventually.

Clonic Seizures: Unlike Tonic Clonic, these big and nasties happen while you’re awake. (Fun fact: Tonic is the part of the seizure where you stiffen and fall unconscious. Clonic is where you convulse). So needless to say, these can hurt. Actually, they do hurt. A lot. I’ve only had a couple in my time, thankfully, but it feels like everything’s described earlier for Tonic-Clonics, except you are wide awake the entire time to enjoy every bump, scratch, and uncontrolled spasm. Oh, and it feels like there are electric shocks going through you. At least it did for me. These tend to last a few minutes.

Tonic Seizures: these tend to happen in your sleep, but they don’t have to necessarily. The muscles in your legs, arms, or abdomen tense up for about 20 seconds. It’s relatively harmless, but can mean for some serious loss of balance if it happens while standing up. (Also they’re just a pain, and can wear you out, honestly)

Atonic: These I’ll admit, can be spooky. Basically your muscles go limp for about 15 seconds at a time. So you might now be able to hold your head up; or suddenly you drop everything cause your arms go out. It’s not fun. It’s actually less than 15 seconds, but some people can have a bunch of these in a row. If its bad enough, some may consider wearing a helmet, if a fall hazard arises.

Myoclonic: Muscles will jerk as it electricuted. Apparently these seizures can start in the same part of the brain as Atonic, and many who have one have been known to experience the other.

So that’s what you missed on Glee! Any questions, comments, moans or groans, shoot em up my way! If anyone has any knowledge of Tonic Clonic Seizures, id love to hear it! And if I missed anything, please let me know!!

Hope this can be of some help for you newbies out there, (or for you other folks like I who never got the full story on their diagnoses til much later lol)

And don’t worry friend. I know Epilepsy is rough. I know it sounds scary, but you’re going to be fine. You’ve got an entire community who has your back :) So hang in there Kiddo!

Sincerely,

You’ll need to talk to your general practitioner or psychiatrist first. I can’t speak for everyone, but I’ve been prescribed anti-seizure medications (that can also help with mood/serve as psychiatric medications sometimes) like... 3 or 4 times through different doctors. For me, the fact that the medications didn’t do anything to help was enough testing to show my symptoms weren’t due to seizures Other people had to see neurologists to get an EEG to rule out seizure activity. 

Complex partial seizures are the only types of seizures you may remember having. They tend to last a couple of minutes, and what happens during them varies from person to person. Most people will become disconnected from what’s going on around them, stare into space, and will take up some automatism (an unconscious action) like picking at their clothing. In more rare cases, they may talk, sing, cry, go for a walk, etc. Here’s a link to more information. Complex partial seizures cause impairments in memory and brain fog, which can look a lot like dissociation or worsen it if you already dissociate. 

Most of the time, people who are heavily dissociating can be brought back to attention. People suffering from seizures usually cannot be until the seizure is over.