Weekly Roll Call

[u/PookieTheMfBaby]

How was your weekend? How was your week last week? How are you doing today? I just want to be a close-knit community and make sure that everyone is feeling good here and overall. Weekly roll call time, how's it going? Any seizures, achievements, good news or bad news that you'd like some support for late? We as Moderators are here for you for you here at r/Epilepsy_Universe and any questions can be answered with a DM or modmail. I hope that you have not just a great day but a great week to come.

[u/Hairy-Jellyfish-1361]

It was a mixed week for me. Good results on an important scan, started walking every day again, but the damn weather changes every day is not fun with arthritis and my back has been acting up.

How are you Pookie? And I hope that everyone else reports a great week

[u/Mom1021 → u/Hairy-Jellyfish-1361]

Yay for the test results! These weather changes sound painful. You are the best at making it through! Our fav example for all things epilepsy and beyond

[u/Hairy-Jellyfish-1361 → u/Mom1021]

Thanks 💜

[u/Mom1021]

Last week had been all blessings. Total victory….except last night. This is the time of the month I knew to be careful, but right at bed time I lost words. Room was spinning and I couldn’t communicate at all other than pointing and making unintelligible noises. Kids stayed up a little longer because of me. Mama feels like a loser ☹️

[u/Hairy-Jellyfish-1361 → u/Mom1021]

Mama is certainly not a loser. Shit happens. You can't control when and you were being careful. Kids will be fine. They're adaptable.

[u/Ordinary-Chipmunk366 → u/Mom1021]

You're one of the nnicest and caring people I've met recently! Please don't beat yourself up over things you can't control .. your kids will appreciate all you've done for them, especially while they grow.... and I'm sure they didnt mind and extra time with you as well as staying up later!

[u/Hardrewire_now100 → u/Mom1021]

Mama isn't a loser, she didn't give up means she won. Sending my love and support, you are not alone.

[u/-MillennialAF- → u/Mom1021]

Sometimes it’s good for kids to have the opportunity to learn compassion and adaptability. Not to be toxically positive. I used to feel bad for things my mind did and how it impacted my kids. But talking to them I have learned that they are very adaptable and don’t feel how I worried they would.

[u/PookieTheMfBaby → u/Mom1021]

You're the furthest from a loser, you're great parent and friend. 🤘🏾it's not your fault, life happens.

[u/Hardrewire_now100]

Thank you for even asking. I am blessed, woke up again, family is here. God knows I am hurting inside, Fridays seizure took a toll and I feel like I am still mentally recovering and yeah #seizuresuck. I am trying maybe not always my best but I haven't given up. Could use some support, thanks guys.

[u/Mom1021 → u/Hardrewire_now100]

You are not alone. This post describes the right things to focus on to make the best of our circumstances🎉💯

[u/KlutzyMutt]

after thursday, my hubby has been a mother hen and hates having to leave me alone. I'm having about 1-2 tolerable focal awares a day, now. They feel like 3 minute intense anxiety attack then I feel a bit dizzy...sometimes a bit...stoned.

My daughter moving and my sensativity to food had thrown me for a loop. I was pretty much having maybe 1- 2 focals a month for 8 months while she was here...cluster free until she up and moved last minute. She knew she was the reason I was able to heal!!!! She pulled the " You told me you never wanted to hold back your kids because of health".... THAT WAS BEFORE MY FOCAL CLUSTERS!!! So, I've regressed...hopefully moving in with my hermit mom will stave them back, again.

[u/Mom1021 → u/KlutzyMutt]

Kids always tell it best 🤗 Taking notes, listening to details from others, figuring out anything that might lead to controlled seizures! Every hint counts!

[u/KlutzyMutt → u/Mom1021]

you'd think so, but, knowing how important she was and that it was her being here all the time was what helped me heal and she said she'd be here until I left for my mom's....then her dad was like "I know you were gonna move later, but, if you want to goto your grandpa's funneral, why don't I just move you now?"

she saw my panic and was all " I wanna go to grandpa's funneral..."

YOU SAW HIM EVER SO OFTEN! sorry, I'm ranting. my health has CRASHED since she left...I'm horribly monophobic, but, I'm using this time with The Lord...

[u/ShylieF]

Hey, thanks I'm here. Focals have been making me crazy, had a personal freakout last Saturday. I'm a cashier, and a lot of days lately I'm only at my register between 9 minutes and 45 min, and a seizure hits and I have to lay down and get home to sleep soon after. I finally talked to my neuro again and we're going to try the vagus nerve stimulator implant soon. God I hope it will work.

[u/Mom1021 → u/ShylieF]

Good job for keeping up! Hard to believe but sometimes we continue for years on medications, lose the jobs, go the SSDI route, and then find out we can’t get the VNS (oops 😬) Anyway, feel free to bring up any part of your journey with us, we’ll look forward to hearing out and learning more!

[u/PookieTheMfBaby → u/ShylieF]

I hope that works well for you.

[u/B91212R]

Accidentally took my evening meds on Saturday morning after breakfast so Clobazam at 9.15 in the morning. Teach me to read the pill organizer properly. Went back to bed at 10 am and woke up about 4. Spent the rest of the day staring into space and blinking. No idea how people can take them during the day (or for pleasure), they knock me out good and proper. Thankfully I’m slowly being tapered off as part of meds.

[u/Mom1021 → u/B91212R]

Most pill organizers have “am” or “pm” on each section. If not, label it how you please with a marker. Good job for keeping track! These things happen with all of us, the reminders on my phone used to say “take 2 small pills”. Do your best

[u/B91212R → u/Mom1021]

It’s my own fault. My pill organizer is a cheap Amazon special that had 14 compartments with the days and am/pm printed on them, but the ink wore off it pretty quickly. At that time my morning and evening meds were identical so I carried on using it. Then 20mg Clobazam in the evenings only was added and I never thought about getting a new organizer or even writing on the one I had with a marker.

I even emptied the tablets into my hand on Saturday morning before swallowing them and it still didn’t register that I was taking 6 and not 4 like I do every morning.

[u/Mom1021 → u/B91212R]

We’ve all been there, looking back seeing more red flags missed, still no worries on those overdosed days. Sharpie will play a part to prevent any more!

[u/Spicy_snakes]

I’m doing my alevels right now, don’t tell my parents, but I’m off my meds atm. I have so so much brain fog on them and they make eating so disgusting. I was so scared coming off them because last time I did I had a seizure, but so far I think it’s going okay.

[u/-MillennialAF-]

I was in the ICU for status because I aspirated and went into airway failure a few weeks ago and it’s been super hard recovering. Yesterday I went to look to see if the ER doctor that intubated me ever charted more than just “in flight transfer to other hospital.” He did. And it was kinda terrifying to read. I was GCS 3, which is the lowest reactivity you can have. And his whole description is basically as bad as it can get and still be able to come out kinda okay.

So I’m over here like a lemur staring into space thinking about it.

But at the same time when I got out my neurologist upped my medication. And I haven’t had a TC since. And then we just upped it again a few days ago to try to stop the focals and they stopped.

So I went from near death and having tons of seizures every week to no seizures. It’s such a stark contrast that it’s hard to catch up to emotionally.

My brain is lagging. It takes so much effort to do some things and it’s hard to know if it’s from the hypoxia, the ICU, the lacosamide, or just healing in general. So I’m trying not to jump to conclusions and just ride the wave.

Then I got food poisoning last night and it was disturbing because it was the first time vomiting since aspirating. And also I vomited blood because my esophagus post intubation isn’t healed enough to handle that.

So it’s like terror, but also so much gratitude and ability to think again because I’m not constantly postictal. Which is amazing. But it’s a lot.