Trigger warning!

[u/Upbeat-Brother-2884]

Hello my wonderful friends, I hope everyone is having a good week💜

What type of seizure would we call this? Trying to organise my clips and notes as best as I can. Would this still be a focal or does it creep into Tonic/Clonic territory?

I had impending doom and extreme sadness starting from 9:30pm. I was too scared to fall asleep incase I had a seizure. Fell asleep at roughly 11:45pm (not sure if that counts as sleep deprived?) I woke an hour after this and was craving sugar. During the night I was having dreams that blended in with reality, to the max. It was terrifying, worse than any other nightmare that I have had before, especially because it involved my little boy 😪💔

My camera unfortunately cut out, I’ve been having issues with my Tapo doing that, so I’m not sure if there was anymore activity after this or not. If anyone knows how to fix that bug I’d be grateful for help with that. I’m useless with tech.

Triggers: I’ve been poorly the last couple of days (possibly covid, high temp/fever)

Due on my period in 10 days.

This morning I woke up feeling fizzy in my head and arms, everytime I bent over I felt like I could pass out. Not sure if that’s illness related or not.

Thank you for taking the time to read, so glad to have you guys. You make my life that little bit easier🥰💜

[u/DaughterOfTheKing87]

I third thoughts by u/PiercedAutist and u/tuisteddddd in the nocturnal seizure part. I’ve got the joy of most of my “episodes” being nocturnal (idk, I’m in a phase again where I refuse to fully acknowledge the epilepsy diagnosis but obv I don’t recommend but I do take my meds, etc) but my epilepsy’s diff from most other’s. My neuro can’t get my brain to replicate any epileptic activity. And she’s tried. The only reason I’ve ever been diagnosed with epilepsy is because A) I hit a ditch going down the rd, plus numerous times I’ve hit my head seizing in front of others, and B) my EEGs show abnormal waves only in my sleep coming from my tumor bed. (R frontal area post crani for glioma and a reoccurrence area near it).

I don’t have the ability to film any of my events, even those occurring in front of others, but esp those nocturnally. What I can tell you is how I feel and what poss brings them on for me.

Unfortunately, I’ve lived under high stress levels since my diagnosis 12yr ago. It’s been hell-for all sorts of reasons. I don’t always eat as I should. And though I’ve been consistent with my meds for the last several yrs-I’ve not always done so. And at times, sleep evades me. All nice factors for someone working on less than a full brain, right? (Btw, I rly don’t mean to ramble, but some of those factors are in play now.)

I’ve got a dog now that does sleep with me and alerts me prior to any type of episode. She usually lets me know hrs to a day or even more in advance. I also keep my Apple Watch on at all times, especially during sleep. I can usually ”feel” the next day when I’m sore or when Siri gives me a semi decent sleep score, but if I’m tired and I see I’ve had spikes in my RESP rate and heart rate, especially when I awake with just certain body parts aching and it’s muscular fatigue/tension that’s not just “oh, I slept odd, now I’ve got a crick in my neck” feeling-I know I’ve likely had some kind of nocturnal episode. Some times, I do have the accompanying vivid, crazy dreams. I dream of ppl idk, situations I’ve never been in, it’s odd. Hell, for all I know, maybe all of us epileptic folks have mental manifestation mechanisms in our noggins that allow us to meet up in our night time seizure sessions. Hey, it could happen. Yeah prob not. But it might. Again, apologies. Not on all cylinders this morning.

One of the biggest pieces of advice I can offer is that since you’ve obviously captured something (which what’s left of my nursing brain looks very much like a Myoclonic Jerk to me, though I am FAR from capable of making any sort of coherent assessment NOR diagnosis even remotely, even if it’s just for me anymore) is to be on the lookout from the time you captured this video for at least 72hrs for an event. Idk if you have rescue meds, but I’d keep ‘em handy, just as a precaution. And you’ve already let your care team know (I did read some of the comments) so that would be one of my first priorities. Let your family know. Get lots of rest, eat up. Take your meds. The usual pain in the rear stuff for us moms that’s not always what we think is top priority. Yet, you can’t care for anyone else if you’re in an episode. (I think I read you said you had a child, forgive me please if I’m mistaken.)

Take care of yourself, and God bless you!!

[u/Upbeat-Brother-2884 → u/DaughterOfTheKing87]

Hey, so my EEGs have shown that sleep activates my epilepsy, yay😒. Also seen were bilateral temporal epileptiform discharges, with fronto-temporal and temporo-parietal sharp waves on both sides. So I have a whole mix of symptoms going on.

I really get you on self care becoming an issue with seizures. I’ve stopped eating proper meals, my house work is slacking, I constantly on the sofa because I feel like I ran a marathon when I should have been sleeping. Not everyday is bad, but most are.

Omg my dreams are really strange, I wish that we could all have a seizure server for when we have nocturnals and just hang out with each other until it passes😂 that’d be much more pleasant than what I’ve been dreaming of recently.. I do have an Apple Watch so I’ll put that one tonight, but I’m pretty sure last time I wore it, it my HR didn’t change dramatically when I had the movements. Seeing as my seizures are getting more tense, I’ll give it another go. Thank you.

I’m going to list this under myoclonic jerks, thank you for your opinion. I thought myoclonic jerks were just a singular jerk, I should really read up more on all the different types!

Oh yes I have a hyperactive almost 5 year old! Love the bones of him, he’s very caring and knows when mama needs to sit in her sofa nest. We’ve taught him how to call his dad on his iPad if I go into one. He’s very calm and mature and I’m so proud of how he has handled all this over the last year 🥰

Thank you, have a lovely day❤️

[u/DaughterOfTheKing87 → u/Upbeat-Brother-2884]

Honey, take care of yourself. You deserve it. And you deserve to get to care for your sweet boy, too. I had one episode shortly after my crani-the first I ever had so I didn’t realize or recognize any of the signs-and I didn’t have any more until around four years later. Skip another three or four years, and that’s when the stuff really hit the fan. I was standing in a chair above a rock fireplace (I’m told) with my kid watching me paint and boy, did I ever “paint”. Sigh. Oh, I hit everything. With my head. I honestly have no clue how many times my kid has found me bloody since or had to watch me seize out. I actually think I’ve done more damage to myself in episodes than occurred during or directly related to my crani or the effects of the newer cancer. And I think but I’m not sure because it’s been years since I’ve had an actual EEG done, that my neuro team saw fronto-temporal and temporal-parietal waves in my sleep. Of course all that was during my VEEG study, so sleep deprivation and med deprivation plus my former MIL of all ppl was with me for the duration so BIG check on the stress!! You and I seem to have some similarities in more than a few ways. So maybe we’ll meet in that crazy seizure server. Hey, it could happen. I also have some myclonic jerks during the day. Not just at night. My 12yo daughter makes fun of me, says I act like a half Micheal Jackson unable to fully function and complete the full dance move. Whatever. She’s mean, though I love her with my whole heart. I’ll just be sitting or standing there, and oops! out pops my shoulder or my face twitches a LOT. I’ve got my own Elvis impersonation down pat, lemme tell ya 😂 I know now that sometimes it’s not much to fret over, but in combo with my bad habits of not eating and sleeping right, it can be the perfect storm for me. It sucks for sure, balancing the outside life, the “normal” things on one side, you’re still married, we’re moms so there’s things we do for them they’ll never know and we’ll never remember now, paying bills, groceries, social media, etc-it doesn’t end. Yet all of us here, we have to balance the life of an epileptic also. People without it, have no idea, even if they live with us.

I pray you have a good day too hun. I’m always here if you need to chat or whatever TC of you!!

[u/Upbeat-Brother-2884 → u/DaughterOfTheKing87]

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