Patch

It’s finally ready! Thx to those in Denver for having me last year & @zahiddewji for the 👕! @BrainAblaze @DCClifford @UCLANeurology @kaileyh175 @DavidBSamuels #sitdowncomedy #CerebralPalsy #EpilepsyAwareness #EEG #linkinbio direct.me/patchcomedy310

I manage my birth seizures w/ daily meds (Tolerance is my biggest trigger) & have rescue nasal spray for the reflex seizures that developed when you found me on here. I’m *technically* med resistant.

Thanks!

My plates weren’t just purple to match my cake yesterday. I told folks it’s epilepsy awareness month b/c of course! 😅

Thanks!!

Thanks!!

#NewProfilePic #34thbirthday

Thanks!!

I’ve consistently explained my new reflex seizure boundaries these last 4 years (Pre reflex, everyone understood I couldn’t drink). And, I’m happy to say that people respect my boundaries wherever I am now.

I just ask to leave me alone with my black out curtains to deal with the migraine & mood swings.

Mine is now med resistant. Failed 4 during the pandemic when I tolerated what I was on for a decade. Have rescue nasal spray in case of a reflex seizure & haven’t been to the ER 5 years and counting!

Laughter through the seizure jokes & concern & fear when I talk about the med side effects & my nasal rescue spray. It’s interesting.

Daily meds.

I use Valtoco that has diazepam in it. Midazolam didn’t work for me when I was originally prescribed emergency meds. It’s been 5 years since I’ve been in the ER due to my spray.

With all the med depression & noise/wind/ a/c trigger risk, plus a pharmacy miscount, I used to be afraid till I was prescribed rescue nasal spray. Either way, I’m singing 🎶 Don’t fear the seizure 🎶 post ictal to feel better. 🤬😭😅

Honor the person’s wishes when they say they no longer want to speak to you when they say you’re unwelcome due to your epilepsy. Relatives cut me off after witnessing seizures & I lost a friend by disclosing my nasal rescue spray.

My stroke in utero was the cause of my CP & epilepsy!

I’m completely aware during mine! 🥵

Sharing the slightest thing that worked for you figuring out your seizures could be huge for someone else.

It’s been a relief having breakthrough seizures as an adult b/c I learned the terms for the symptoms I had as a kid & realized that this community is bigger than I thought as I was the only kid I knew growing up w/ CP and/or epilepsy.

Reminding myself that med tolerance/being under medicated like last year w/ my pharmacy med miscount is my biggest trigger & everyone egos shared their epilepsy stories w/ me once I started tweeting into the void in 2019. You found me first before @kaileyh175 !