The Twitchy Life

Stories from a life with epilepsy

[thetwitchylife]

Moving!

Hi all!  I made a new home for this tumblr, called @the-twitchy-life!

Why?  This is actually a side blog, and I’m kinda tired of not being able to ‘like’ stuff or leave comments on people’s posts without reblogging them.  So there I’m going, see you there!

[thetwitchylife]

Clobberin’ time

So, I’m not a physically violent person.  The only way you’d get me to put a GRR on the embodiment of epilepsy is if it meant that I wouldn’t have epilepsy anymore.

(Then that fucker would be doomed.)

What I would want to do?  Is dump epilepsy. “It’s not my fault, it’s yours.  That’s right.”

Just tell it every single thing it’s done wrong, every single thing I’ve had to miss, every single back-slide and pill and every therapist’s visit, and I’d bring an easel to do a little rough math to figure out how many pills I’ve taken because of that sack of low-down shit, and I’d tell it how much money and furniture it owes me, and cups and plates, (I might start throwing things), and I’d dump its sorry, slimy no-good ass on the street corner where it belongs.

[sexioto]

[crilbyte-deactivated20240607]

Oh shit. No. Shit. Thank you

[villianext-deactivated20190407]

Just gonna reblog this out of gratitude because I actually did forget…

[novacaineandabelle]

Fffffffff let me get right on that. 

and then reblog for the next forgetful son of a bitch

[blondiez-b-deactivated20171118]

I’m so great full for everyone that is reblogging this. I totally forgot to take mine

[optimysticals]

I think that there is some sort of unspoken fairy godparent thing where you see this, realize that you forgot your meds, and rebagel it because if you forgot someone else must have. And in our turn we all take care of each other, even if we don’t know it.

[thetwitchylife]

Awareness whoopsie?

I was at the grocery store and the cashier had bright purple hair and after I got done complimenting the vibrance I asked if it was for epilepsy awareness month.

Shock and awe, it wasn’t.  But she was very sweet, sweeter than someone who’s got to stand for hours on end has any need to be, and I went on my way, now laden with throat drops, tissues, and tea.

Because I have a cold.  Boo.

[fuckepilepsy]

Idea: a cosmetics line designed specifically for people who have epilepsy. It would be no different than any other cosmetics line, except that the entire purpose would be to accentuate the assorted scrapes and bruises we accrue whilst suffering a violent seizure, rather than to cover them up. The point of this would be to publicly establish that a) we are not ashamed of our battle scars and b) surviving seizures is metal as fuck.

Only models who have epilepsy would be signed to represent our brand and the advertisements would double as awareness-raising campaigns. Our social media presence would promote and feature selfies posted by people who have epilepsy wearing our products.

Unlike other cosmetics lines, this one would not for one second condescend the consumer by implying that applying makeup is necessary to improve anyone’s physical attractiveness. In fact, commercial advertisements would conclude by reminding consumers that we are cute as fuck and that no chemical compound could possibly improve upon perfection.

Okay look I didn’t say it was a good idea.

[thetwitchylife]

Okay but: glitter.  Like, all bruise-colored stuff, but with glitter so we’d have super-sparkly bruises.  And presumably we could match our eyeshadow/lips/blush/whatever to our super sparkly bruises.  

1: It’s clear that these are intentionally-done bruises and not meant to hide

2: The glitter really draws attention

3: Arnica-based cream so it helps them heal better 

The point is not to make us look better with cosmetics, but to give ourselves dart-frog style markings to make it clear that we are not to be messed with, and also we’re sparkly.

Maybe also comes with a line of clothing that makes it clear we’re epileptic, not streetfighters or victims of abuse.

[dreadfulexcuse]

I wish there were more than like 5 epilepsy blogs that are somewhat active

[thetwitchylife]

I mean, want to be one with us?  We’re weird and inconsistent and occasionally overshare, but the more the merrier!

[everythingstemporary]

I’m working on being one too but my fog/exhaustion usually leaves little energy for content creation of my own.

[brainbuffering]

It’s really hard to be part of an active part of a community when the reason you’re part of that community is your inability to function or find energy to do certain things. Like participate in a community.  

[thetwitchylife]

Good lord yes.  I get these ‘you haven’t posted in a week surely you must post something now’ guilt moments.  Now that my job involves less worked-to-the-bone days, I can be all super-involved.  But yeah, I look back at a bunch of my old posts and just go ‘damn, you were tired.’

[scooplery]

i still can’t believe i did this

[dreadfulexcuse]

When the brain fog kicks in

[thetwitchylife]

Oh god though, this is so real!  I get to the front of the line and just- ack.  For me it’s probably not a brain fog thing?  But like, I’m allergic to dairy and caffeine screws with my meds/seizures so it’s always got to be a 

small 

decaf

latte/tea/coffee/whatever

with soy/almond/coconut milk

+ check that if I got anything fancy, like a flavor- especially chocolate- doesn’t have milk in it

And then I always have to check that they got it all bc that’s a lot but if they miss ANY of it I’m going to feel awful.  And if I miss any of it- one step, one word- then I’ve just ordered a coffee I really shouldn’t drink.

Oy!

[thetwitchylife]

TFW

… you lose everything, including two checks (disability payments from the work I missed after surgery) and the prescription for the orthotic I’ll need in my shoe (for the broken foot).

Like, I was disorganized before the epilepsy, but it worked because I could at least remember which pile I put it in.  Now…

Now I have memory loss, so I’m short $250 and one orthotic.  I’m a mess!

[thetwitchylife]

So, that lost $250?  I got it back.  The disability folks contacted me a while back to say “hey, you never cashed that check...?”

Yay?

[thetwitchylife]

Do you ever feel like in the great Power Rangers vs. Goldar fight of seizure vs. Lorazepam, you are the city?

[captainfantasticspastic]

“So the doc said I have ____ Seizures. What does that actually mean?” An Updated Cheat Sheet

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,

Captain Fantastic Spastic

[thetwitchylife]

Once again, Cap says something articulate, helpful, and intelligent!

Reblogging bc hell yeah

[thetwitchylife]

The Word Is Out:

Yoga Is Not a Treatment For Epilepsy

No, seriously, they did a study about it.  Result is: It made people relaxed and they generally liked it, but it should not be used to replace medication.  This surprises approximately no one.

You can read the whole study here:

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001524.pub3/full

There is a Plain Language summary just beneath the Abstract, but above all the charts and tables.  That’s really the part I read, because I know my limits.

[thetwitchylife]

So we turned up my VNS again this week and yowza it feels very high.  Not sure I’m fond. It’s sort of a cold sandpapery squeezy/pushy feeling in my throat, and I really am looking forward to it going away.

I like what it does for the epilepsy, but the whisperiness I get, and the hoarseness are less good.  

I sound hoarser all the time now, which makes me sad.  I like to sing, but I wonder if my voice is going to go permanently from the VNS. I look forward to being off the vimpat (which is an interesting process), but the VNS definitely has a cost.

[dreadfulexcuse]

November is Epilepsy Awareness Month!

I fully expect my dashboard to be flooded with that sweet, sweet Relatable Content™️

[thetwitchylife]

I vote new mascot for epilepsy = Sloth.

What kind of sloth?  Any kind of sloth.  Just like there are many kinds of seizures, there are many kinds of sloth.  

[thetwitchylife]

My dad is concerned with my epilepsy. I recently had a seizure, and this worries him. He is looking into putting me on a diet that's supposed to help. It's a high protein intake, with less carbs. Thoughts? Do these diets help?

That sounds like the Modified Atkins diet, or the ketogenic diet, or a variety thereof.

Those diets help some people, and don’t help others- just like any other treatment.  I tried the MAD, and it didn’t help me.  That doesn’t mean it wouldn’t help you!   But realize that MAD, or the ketogenic diet, are medical treatments.  Just because they’re done by changing what food you put into your body doesn’t mean you don’t need to check in with a doctor. 

And to the neurologist (or at least a GP) I would add a nutritionist, because MAD is hard.  Like, super hard. A nutritionist can point you to resources so it’ll be easier. 

I think there’s a handful of other folks who have tried (and might still be on?) the Modified Atkins or ketogenic diet.  Folks?  Help out?

[thetwitchylife]

What do I expect from a neuro appointment ?? First one?

Lots of questions from the neuro about your seizure history (assuming that’s why you’re seeing them), including how often you have them, when the last one was, what kind of seizures you have, if you have auras (visions, odd feelings, smells that nobody else smells, etc), if you’ve noticed any triggers, etc.

A basic neurological exam came with mine (at a big US hospital), which meant: they checked my balance, coordination, vision, memory, and chances are they were paying attention to my speech for slurs or stutter.

I... honestly don’t remember it that well, since it was 10+ years ago.  We talked over seizure history, my life was like in terms of drinking, drugs, mental health, diet, how much sleep I got, stress, stuff like that.

They told me what seizure disorders are, what they’re like, what to expect in the future in terms of medical follow-up, and talked about the difference between seizure disorders and epilepsy.  They told me what jobs I couldn’t do (military, police), and what my current restrictions were (no driving), and reassured me as best they could.  

I was 18, so my dad went with and asked a lot of questions, which I don’t remember because I was 18 and overwhelmed.

I left with instructions on how to follow up, and a letter describing what had happened in the appointment.

BUT this was just me, at my one hospital with one doctor in one city with one insurance.  Lord know it’d be different for anyone else.

[thetwitchylife]

so i told the vp of my school to do smth for epilepsy month, i know we're doing purple outfit but do you think i should bring up the epilepsy foundation thing?

I’m not sure what the Epilepsy Foundation thing is, but they’ve probably got great resources for your school!  They have stuff for teachers, and for students, so they’re a good thing to give admins.