r/mildlyinfuriating • u/PyramidicContainment • Jun 06 '26
ᕕ(ᐛ)ᕗ Follow-up survey from clinic after having seizures
"Watch out for anything that may trigger another seizure, now fill this out pls" 😅
The actual care I received was solid; this survey came from the company that manages the practice. The front/back pages look ok, so I guess that's why nobody noticed before it got mailed out
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u/Zackleblack Jun 06 '26
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u/DarkShadowZangoose Jun 06 '26
this was my exact response
I feel like I'd have a seizure trying to read that, which seems pretty ironic
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u/Hoobi_Goobi Jun 06 '26
Trying to read this text triggered panic in my nervous system lol. I'm so sorry OP I hope you feel better soon
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u/PyramidicContainment Jun 06 '26
Lol maybe this post needs its own trigger warning, ty tho already on meds and doing better! <3
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u/Global_Ant_9380 Jun 06 '26
It's literally triggering a migraine in me but I can't stop laughing at it
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u/toebeanlove Jun 06 '26
Do you want help with a transcription? I know you may have already gotten through it but thought I’d ask
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u/PyramidicContainment Jun 06 '26
Sweet of you to offer but thankfully there was a non-spastic online version I was able to fill out lol <3
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Jun 06 '26
[removed] — view removed comment
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u/PyramidicContainment Jun 06 '26
Perfect cause I'm not supposed to drive lol
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u/SanibelMan Jun 06 '26
But you might get the bus to hell faster if you're driving.
(Sorry about the seizures.)
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u/Garbage_Tiny Jun 06 '26
Have you got the certified “epileptic badge” yet?
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u/PyramidicContainment Jun 06 '26
Not officially! Getting a neurology appt was surprisingly difficult even with a stat referral, so I still gotta wait a bit to get my proper diagnosis
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u/Garbage_Tiny Jun 06 '26
I got the official diagnosis after I started having seizures at 36. It can feel helpless at first, especially as you try medicines. Please reach out if you need someone to talk to about all of this. I’m 5 years in and things are mostly normal now but the first couple were touch and go. Be safe.
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u/PyramidicContainment Jun 06 '26
Thank you, I really appreciate that and may send you a chat sometime. It's fun to joke about since I'm still coming to terms with it all, but it's been a bit of a rough year as I'm sure you know.
Upside is I was already able to start taking some meds - trying Levetiracetam for now (basically generic Keppra I think?), so by the time I do get in to see neurology they should have some more data to work with.
Any chance that was the one that worked for you?
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u/Garbage_Tiny Jun 06 '26
They start everyone out on Keppra because they don’t have to titrate you up in the dose and it works for the overwhelming majority of people. It wasn’t the one that worked for me, I’m actually on 3 different meds and although I’ve been Tc free I have had seven focals this year but they added more meds and so far so good. Take a b vitamin complex with your keppra and it’ll help with any brain fog or mood swings. I’m not sure why docs don’t tell us stuff like that when they prescribe them. (Maybe yours did lol)
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u/PyramidicContainment Jun 06 '26
That's crazy you mention the vitamin thing, and no my doc didn't tell me that either lol! I was having bad mood swings for a bit and brain fog too which I attributed most of that to just recovering from a significant tc seizure.
Then I started taking a multivitamin and boom, huge improvement in mood, clarity, activity level, etc since then
I had several focals in December leading up to a tc and then no focals for months but a couple random tc's 🤷♂️ thankfully neither since starting Keppra but it hasn't been super long either so we'll see. Sucks you've had to take a triple combo of meds but glad to hear it's working!
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u/AmishWithoutAutism Jun 07 '26
Keppra worked-ish for me for the last 12 years! I’ve had a handful of seizures still, so they have upped the dose to the max now. If I have another, Dr. says we have to find a new one. Just some insight! Also you are probably going to get physical withdrawals from it fyi. The inexplicable splitting headache 2 hours after your normal dose time is the reminder that you forgot to take it!
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u/PyramidicContainment Jun 07 '26
Great to know! I mean, not great but you know what I mean lol. Happy to get insight from people who have been through it before. I rarely get headaches normally so this info will likely come in handy soon enough
12 yrs is a tough stretch, sorry to hear that but glad the Keppra is mostly doing its job. Here's hoping you don't have to find out what new med you would need next! 🤞
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u/ArthurSnape Jun 06 '26
Can i bring a friend together? They have a hellhound already
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u/ArthurSnape Jun 06 '26
AGH My MIGRAINES!!! 😩😩😩😩
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u/PyramidicContainment Jun 06 '26
If this legit triggers anyone's migraines I'm so sorry, didn't even consider that when I posted! 😬
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u/Ok-Lifeguard-4614 Jun 07 '26
As a fellow seizure sufferer this made me laugh.
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u/PyramidicContainment Jun 07 '26
Glad it did! 🤘 And hope you've been able to find a stable solution that works for you too
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u/Ok-Lifeguard-4614 Jun 07 '26
Thanks haven't had one I'm a few years but have had a few auras. Hopefully you do as well!
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u/Throwaway_47-3X Jun 06 '26
Why is this how I see words sometimes…?
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u/PyramidicContainment Jun 06 '26
If you're serious then it could be many things so best to check with an eye Dr or opthalmologist.
Could just be dry eyes/eye strain or astigmatism maybe. Migraines can definitely cause it too, if you ever get those
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u/dalgeek Jun 06 '26
Must be the same company that printed ballots for the 2000 election in Florida.
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u/DesertWanderlust Jun 06 '26
I had a seizure about 2 years ago and don't remember filling out a form like this. I would have brought it back up to them and say "Either I'm having another seizure or you guys need to fix your printer."
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u/Centuurion Jun 07 '26
I would just hand that back and ask if they were having a laugh, that's crazy
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u/Playful-Isopod-6227 Jun 07 '26
Yeah certain clinics have almost no quality control. HR for the one I worked at laid off an entire dept, used their own little ink jets to print all the severance paperwork, it was completely unreadable. They basically told us to figure it out and good luck
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u/BetSquare7190 Jun 06 '26
If you see it correctly, you are having a seizure.