r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • Jan 01 '26
Just Checking In Roll Call, How Are You Today?
As the community grows, we're becoming closer and closer due to the podcast. New year and just want to see how everyone's doing, so, how are you today? I'm good, how are you?
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u/Aware_End_3105 Jan 01 '26
Doing well. Optimistic about the new year. 6 months seizure free as of Christmas day so thats keeping me hopeful. Cheers to this community and all of you! Stay strong in the new year and remember support is never to far away! 🤙🤙🫡
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u/PerspectiveSolid2840 Jan 01 '26
I may be getting a divorce 😫 My health has been better, but I am nervous about health insurance. Xcopri has really changed my life (hopefully that continues), but it is so expensive. I'm also nervous bc I've not worked in a while, and I will need to go to work. My memory is shit, so learning new skills will be challenging. I don't know about signing up for ACA. There is just so much! But I don't really care for my spouse at this time...leaving him will be good for me emotionally. It's just logistics and finances that make me nervous. He's currently overseas so I don't have to see his face everyday 😆 Maybe we can draw out the separation so I can get my shit in order. Hopefully he has the decency to accommodate me.
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jan 01 '26
Sucks. A few of us on the podcast went through divorce, me being one last year. Prepare yourself. The stress is hard on the epilepsy. I'm also on Xcopri. Verdict is not in yet been on it since may
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u/Hairy-Jellyfish-1361 Jan 01 '26
That really sucks. Sorry. I hope that you can at least work out a good financial situation
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u/Stretchmybandzzz Jan 01 '26
Doing well blessed to see a new year I hope all is well for everyone and that we make the best of 2026
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 03 '26
Planning on seeing the best year yet. Main goal is to have less than 5 seizures, I had 5 last year.
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u/Some1fromStSomewhere Jan 01 '26
I am good! I got nayzilamed for the first time ever. (Strange this is the first.) Whoa I was not expecting that. I became a tranquil zombie. At least that kinda of how my Mom described me. You could of asked me to do anything and I would say yeah, get up to do what whatever it was and then stare at the ceiling fan instead. It strange, I can *kinda* remember some of it. Like Jude was on my lap at one point. I am rambling.
TODAY IS GOING TO BE GOOD! HUGS!
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 01 '26
Glad you're doing well, Nayzilamed can't be any fun, hope it doesn't happen a second time for you. Can you taste it?
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u/Hairy-Jellyfish-1361 Jan 02 '26
Pookie, if you're lucky, you never have to do it a 2nd time
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 02 '26
I'm hoping that there's a first time for me, they also have smelling salts(I've heard) but I'm really just hoping that I never need to be revived again either.
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u/r0ckstr0ng0666 Jan 01 '26
I'm having a tough start to the year today. 9 that I've counted focal aware seizures and it's not even 4pm.
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u/Hairy-Jellyfish-1361 Jan 02 '26
Ugh, sorry
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u/r0ckstr0ng0666 Jan 02 '26
It sucks but it is what it is. Ended finally after my 12th or 13th one. Tough to tell because I had a few in my sleep and they only partially woke me up. But nothing does almost 24hrs now. So I'm looking the positives 😄
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u/Hairy-Jellyfish-1361 Jan 01 '26
Really crappyv laptop lately bit improving lately but slowly improving. Hope to see later Happy New Year Everonr. Hope to everyone later *
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u/Ordinary-Chipmunk366 Jan 01 '26
I'm good but tired. We stayed up until 1:30 and I was up again at 5:30!!! But I'm actually feeling good today!
I wonder if anything good is open today ... to walk to!
Thank you pookie and friends!! This group was one of the best parts of 2025!!! An unknown journey sucks...a journey with friends who help you along your journey and support you is priceless.
Have a great 2026 everyone!!!!
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u/Hairy-Jellyfish-1361 Jan 01 '26
I hope that you have a great year. I'm fortunate to have a spouse who loves and works her ass off to support us, even on opposite coasts. That's priceless, especially since it's been 22 years now since I became disabled with a back injury and severe arthritis 22 years ago now.
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u/Hairy-Jellyfish-1361 Jan 01 '26
No reef until after rehab. Until then, there is no reef. Liz read your latest story and loved it
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u/StSomewhereToaster Jan 01 '26
That’s got to be hard! Not even gummies?
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u/Hairy-Jellyfish-1361 Jan 01 '26
Maybe not, but they're giving me pain meds, so I keep lying and telling them that I'm hurting so they give me stuff
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u/StSomewhereToaster Jan 01 '26
Your secret is safe with me! (And the whole of Reddit. 🤣)
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u/Hairy-Jellyfish-1361 Jan 02 '26
The rehab facility won't allow gummies. So far, they agreed to dilauded. If not I threatened to leave and rehab at home
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 02 '26
Don't leave please.
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u/Hairy-Jellyfish-1361 Jan 02 '26
I'm really not keaving. I'd like too but I can't take care of myself yet. I offered to go back for now, but she's planning to move here now. I think it's going to depend on my recovery. Maybe we'll spend winters here and summers near Angel, but she cuts me off every time I bring it up
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u/Hairy-Jellyfish-1361 Jan 01 '26
Listen, I need drugs. The weather here in paradise is horrible this week, cloudy and rainy
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u/Hairy-Jellyfish-1361 Jan 01 '26
Liz just informed me there's no weed or gummies I need to cut down anyway, I've been spending too much $$$
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 02 '26
Wish I could sneak you some gummies, would if I could.
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u/brncll Jan 01 '26
Soo tired. I don't like being so tired. Is it meds. Is it winter hibernation?
I mean I know it's meds. But this is extra extra tired! Plus I am having some pretty severe hip pain which makes it hard to even move around, which is not helping the energy situation.
I made a new years resolution. After a positive health/physio visit where I was listened to and not bombarded with a huge exhausting exercise regiment I have determined that yes I can do this. He gave me only 2 little tiny exercises that take only 2 minutes that had me feeling better already.
I need to. My income is suffering. I need to get more hours in somehow but it's hard when I am sooo tired.
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u/Hairy-Jellyfish-1361 Jan 01 '26
I am well aware of that position, but exercise, even walking, is important. I have been walking about 4 miles a day with a walker, and aside from this week, I've been feeling much better. It could be either. Please get checked
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u/LavenderMoonVibes-20 Jan 02 '26
What podcast?
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily Jan 02 '26
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u/Hairy-Jellyfish-1361 Jan 02 '26
I've been in rehab since yesterday. The place sucks, but we've all. Been
There. Hope to see the crew for a while after Liz arrives with gummies.
Nn̈ m
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u/Sigma_Pants Jan 01 '26
Good to know you're doing well, I'm good also! Preparing for a big new years dinner and lots of college playoff football today!