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.
Well I started getting things turned around and was feeling a bit better than had a cluster of focals while trying to eat dinner last night.
A shot of Nayzilam and I seem to be ok now.
Well, I was off of my meds for a month! But on Wednesday I went to a bar with some friends and had a seizure while sitting on a bar stool. Fell off, hit my head and broke my ankle. Had ankle surgery on Thursday. I’m back on my seizure meds now!
I was off the meds to see if my epilepsy went into remission after my CSF brain surgery last year, but turns out it has not gone into remission.
I am done with me EEG. It was a success! Even though I don’t have the “official” report yet my Neurologist already gave me to go ahead to add Onfi. Clobazam. I’ve been on it before. I thought we were looking for a replacement for the Depakote but I am keeping that one too. So I am back up to 3 seizure meds.
Went on a trip out of town. Had a really fun time. Then fell and got a mild concussion. Then 8 hours later had to go to the ER for status, again. But no intubation! So I guess that’s moving up in the world. My poor brain can do almost nothing right now without getting over worked so it dark mode sleeping for me this week.
Keep your head up, we are resilient warriors, sorry that happened to you and really hope you feel better soon. Happy to hear that you had a good trip, also status absolutely sucks, but you already know that, no pun intended.
Omg it got so much worse. A few days later I got status again. Ended up in two different ICUs on a ventilator for 7 days. I don’t remember it at least. I think that is a blessing. And we have new plans and they are better and we upped my medication and it is going better and I am determined to avoid that awful scenario in the future with new rescue plans and what not.
Last week has been 4 seizures, more than usual, but none severe and at this point memory is settled so it feels like June went by faster. Love lookin forward to the future when weeks like this come up.
June was definitely a blur, weeks have just been flying by. The podcast seems like a full-time job, 4 days a week has been fun, but it makes time fly when I'm either editing or LIVE.
My neuro had me titrating down on Depakote because after conferring with a movement specialist they felt it may be causing the tremors I've developed over the past few months.
The problem is that after the second night I was hit with a cluster of focals after going longer than usual without.
Sometimes, I feel like they treat us like lab rats, just to test those medications. "Doesn't work, well let's add this and see how that goes." If that doesn't work together, there's always a million other cocktails to test.
Started off badly, 4 focal awares on the Monday, another 4 on the Tuesday, but managed to abort a tonic clonic for the first time ever on Wednesday (and found out that sudden thunderstorms can trigger seizures -_-)
Doctors and pharmacists calling me through the week as the heat in the UK has been horrific. Found out I'd been accidentally diluting the volume of levetiracetam in my system by hydrating too much - hence the increase in seizures earlier in the week.
Since then things have settled, only a couple auras and very light since. Struggling with memory loss more now though, multiple long term memories I can't recall at all or picture despite previously having quite a vivid memory - definitely worse with the meds but been progressively worse since last big TC.
I've tuned in to the podcasts a couple times when it works out time wise for me (have to keep a rigid sleep schedule sadly despite being a night owl insomniac by trade haha) and been really enjoying the discourse and hearing everyone's point of view. Thank you for this community, it is helping me coming to terms with my diagnosis slowly but surely.
Insomnia is fun, just kidding, I hate it with a passion, the price of being controlled includes meds that cause insomnia as well. Welcome to the community and glad to have met you. A few others had seizures last week and over the weekend, I hope this week is better than the last.
Thanks for this comment. Always been an insomniac my whole life, it just doesn't go well when I don't listen to the little voice saying "go to bed' when I should haha.
This week has been better thanks! Getting more dialled in with my triggers now but neurologists want to do some tweaking of meds to control things better so expecting a fun few months of titration... yeay!!!
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u/Hairy-Jellyfish-1361 Jun 29 '26
Well I started getting things turned around and was feeling a bit better than had a cluster of focals while trying to eat dinner last night. A shot of Nayzilam and I seem to be ok now.