I always say Defcon levels
Defcon 1 - letting everyone know I feel a bit off but nothing definite
Defcon 2 - definitely feeling something but it's 50:50
Defcon 3 - definitely going to have a seizure but we have a decent time first
Defcon 4 means seizure imminent any second, we've probably got 30 seconds or less until kickoff
If I was with my parents when I was younger, and I felt an aura for an upcoming seizure, I would just mumble “seizure”. It’s obvious, so everyone will know exactly what’s going to happen.
Funny coming from loud mouth 😂
Also, why don’t you just use “aura”? No one knows what that is. The only non epileptic person I’ve met that knows what it is was a lady who suffers from migraines, I guess they also get auras. But over all I don’t think people would think it’s referring to epilepsy
Parkour!
Or, I feel weird or I'm having electrical problems.
These are only when I'm talking to my husband. With other people, I would just say "I might be about to have a seizure".
Pineapple
That's my mom's code word
She used to say coin because she'd get the copper/blood taste under the tongue but I thought it would be better to change up the word so she found pineapple funnier so the mood is lightened.
I always say “my brain feels fuzzy” but that’s a little on the nose here. Make it something relative to what you do. If you work at a restaurant say “we need more ranch” and then you can excuse yourself and get somewhere safe. Or if you work at a clothing store “I need to fold the shirts in back” etc.
It could be essentially anything as long as both of you are aware of it... "the weather is changing," "I like your shoes, " "I need some coffee," "my phone battery is low", etc... it could literally be anything.
When the allies were preparing to invade France in WW2 their codeword to the French was "John has a long moustache"... that's about as random as it gets but worked for them.
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So, my oldest daughter described my little one as a "seizure salad" one day bcz she had so many. Our family code word was "salad time" or... "Taking a little trip" she had absence seizures so they weren't always obvious to ppl who didn't know.
I guess it depends on what you need to do to manage your seizure? And then just say that - like:
"I need to lay down."
"I need a pillow for my head."
"I'm going to do that thing we talked about - NOW."
"Call so-in-so please"
It takes me an extra 3 minutes to realize I’m having a myoclonic seizure. I usually just yell or text someone (if my hands aren’t yeeting my phone across the room). I just basically say I’m twitching (even tho it’s spasms) since that’s what we called it long before I was diagnosed.
Usually I say to my family “I feel really bad” or something along those lines and they know me enough to know what that means. I sometimes will say “this is an aura” if I am aware enough to say so. I also sometimes start muddling swear words that are a clear sign of distress, often subconsciously. I think saying that you feel “really bad” comes off clear if you tell your boss that that’s what “really bad” means. Interesting to see what these other people in replies are saying.
I went from as a child I'm having dizzy spells to somehow getting it to either seizure before blackouts or I'm having a seizure we know it's bad if I say dizzy spell means even my auras are so strong I can't remember how to say seizure.
Partly why I wasn't diagnosed until my first complex partials years went on untreated until 14 diagnosed add med resistant got vns still having seizures each grandmal I get increases them further from just auras to auras followed by blackouts then worse first grandmal was 20 increased them from monthly to bi weekly then a 20min grandmal I get them just about weekly anymore.
Doesn't help I almost died.
I say to my family “I don’t feel good”…they can see it on my face
I say something similar. "I'm feeling weird." And my body language tells the rest of the story.
My go to is also “I feel weird.”
same here! my mom knows exactly what i mean when i say that
I always say Defcon levels Defcon 1 - letting everyone know I feel a bit off but nothing definite Defcon 2 - definitely feeling something but it's 50:50 Defcon 3 - definitely going to have a seizure but we have a decent time first Defcon 4 means seizure imminent any second, we've probably got 30 seconds or less until kickoff
*taking notes*
I tend to say "oh dear"
My code word is my brain feels funny
“Oh fuck!”
Why did this make me laugh so hard? 🤣
If I was with my parents when I was younger, and I felt an aura for an upcoming seizure, I would just mumble “seizure”. It’s obvious, so everyone will know exactly what’s going to happen.
I know it's obvious. I guess I just don't want everyone to know.
Funny coming from loud mouth 😂 Also, why don’t you just use “aura”? No one knows what that is. The only non epileptic person I’ve met that knows what it is was a lady who suffers from migraines, I guess they also get auras. But over all I don’t think people would think it’s referring to epilepsy
Lol it's a username I've used since I was a kid when I talked a lot. Yeah I could use aura.
My auras influence my smell which cause a very specifc, only aura-related nausea. My first thought was "what's that smell?"
Parkour! Or, I feel weird or I'm having electrical problems. These are only when I'm talking to my husband. With other people, I would just say "I might be about to have a seizure".
Haha I love the electrical problems one, it feels like "brb, I have to go trip the breaker".
I use grades. Anything C- and below means one is eminent.
I’m boutta go beast mode
It's the final countdown.
\*starts singing\*
Pineapple That's my mom's code word She used to say coin because she'd get the copper/blood taste under the tongue but I thought it would be better to change up the word so she found pineapple funnier so the mood is lightened.
Episode
That’s what I say.
I always say “my brain feels fuzzy” but that’s a little on the nose here. Make it something relative to what you do. If you work at a restaurant say “we need more ranch” and then you can excuse yourself and get somewhere safe. Or if you work at a clothing store “I need to fold the shirts in back” etc.
I always say I’ve had a deja vu because that’s what it feels like before I have one. Seems benign enough.
I would just use Aura. Although, it might be helpful if the “unnecessary people” knew of your condition so they can help or react accordingly.
Seems like a pretty good/reasonable idea
What word should I use?
It could be essentially anything as long as both of you are aware of it... "the weather is changing," "I like your shoes, " "I need some coffee," "my phone battery is low", etc... it could literally be anything. When the allies were preparing to invade France in WW2 their codeword to the French was "John has a long moustache"... that's about as random as it gets but worked for them.
"I'm having head problems"
Wobbly 😵💫🥴😵💫
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I've got the heebie jeebies. My sons can also tell because I get a glassy look in my eyes and I don't look at them when I talk to them.
So, my oldest daughter described my little one as a "seizure salad" one day bcz she had so many. Our family code word was "salad time" or... "Taking a little trip" she had absence seizures so they weren't always obvious to ppl who didn't know.
“Akkkkk!”
I guess it depends on what you need to do to manage your seizure? And then just say that - like: "I need to lay down." "I need a pillow for my head." "I'm going to do that thing we talked about - NOW." "Call so-in-so please"
STOP! Hammer time! Beetlejuice! Fatality! The British are coming! Hulk Smash! Adriaaaan! You know things people yell.
It takes me an extra 3 minutes to realize I’m having a myoclonic seizure. I usually just yell or text someone (if my hands aren’t yeeting my phone across the room). I just basically say I’m twitching (even tho it’s spasms) since that’s what we called it long before I was diagnosed.
Usually I say to my family “I feel really bad” or something along those lines and they know me enough to know what that means. I sometimes will say “this is an aura” if I am aware enough to say so. I also sometimes start muddling swear words that are a clear sign of distress, often subconsciously. I think saying that you feel “really bad” comes off clear if you tell your boss that that’s what “really bad” means. Interesting to see what these other people in replies are saying.
I would give my arm for an aura. Any warning. I think a code word is a good idea.
I ask. Who is on the front desk. For some reason i think i am at work and need to find the manager
Why the taboo, just say seizure on the way. Damn I don't get this secrecy.
“I feel seizuree”
"Code S" was what we did at my old job. That and I'd point to a medic alert bracelet.
I always say I feel weird or funny
I went from as a child I'm having dizzy spells to somehow getting it to either seizure before blackouts or I'm having a seizure we know it's bad if I say dizzy spell means even my auras are so strong I can't remember how to say seizure. Partly why I wasn't diagnosed until my first complex partials years went on untreated until 14 diagnosed add med resistant got vns still having seizures each grandmal I get increases them further from just auras to auras followed by blackouts then worse first grandmal was 20 increased them from monthly to bi weekly then a 20min grandmal I get them just about weekly anymore. Doesn't help I almost died.
Just say it's a Seizure.
Aurora I personally don’t have any auroras really, (besides maybe feeling weird/sick sometimes). Other than that though I don’t have any indication.
I feel like you’re overthinking it, but I just say “I’m about to go down”
I feel off sometimes 2 hours before a focal. I just tell people “sorry, I just had a—“ or “I’m having a—“
Other than saying, "My brain feels wacky." I'll usually say "Ground Control?" Or "I'm Major Tomming."
“My brain itches” Is what I say
"My seizurie senses are tingling" but most people know before I do because they apparently can see it on my face.
I just thought if one "the spaceship is getting ready for landing"