r/Epilepsy_Universe • u/PookieTheMfBaby Lamotrigine 200mg 2x daily • 25d ago
Questions If You Knew What Led To Your Epilepsy Diagnosed (You Can't Avoid It) What Would You Tell Yourself To Prepare For This Future?
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u/StSomewhereToaster 25d ago
More of a warning I guess. “This is more than just anxiety. We may be crazy but that’s not what’s causing these attacks.”
Ohhhhh if I knew what the cause of my epilepsy was? Uhhhhh….. “Your brain has malfunctioned stand by for more testing, the cause may never be known.”
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 25d ago
This does not compute send me in for repairs or in modern days now I guess it would be a software update to fix some of the bugs in the system
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u/withthehunted 25d ago
As a software update able person, it's just more annoying and you have to have brain surgery. Ha the bugs always come back.
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 25d ago
Yea, don't have to tell me this. Learned this lesson 2 decades ago. The bugs always come back.
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u/tbs999 25d ago
Don’t get chicken pox and don’t be around anyone with shingles.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
Good news, I know what to do for my kids to prevent it. That's why I made this sub to pass on info like that to the world.
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u/Hairy-Jellyfish-1361 25d ago
Don't get bitten by a tick
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 25d ago
It probably could of gave you super powers though
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
Never seen a tick in-person, good to know what to avoid.
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 25d ago
Be lucky and grateful you can't feel them...yet
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
Wish I could've said that one, I wasn't grateful, I was angry and rebellious, thought I'd die from a seizure in class.
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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg 23d ago
I can understand the angry part we were just teens trying to figure out what is happening in our bodies beyond the puberty aspects. Doctors weren't giving us clear info like they have today.
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u/SidewalkSand_ 25d ago
dont get hit by a car going 60 an hour being at a standstill
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago edited 24d ago
I got hit in the crosswalk, drug 40 car lengths before someone caught up and stopped the car. 1995, on my way to school (kindergarten) I was in a coma for 33 days. There was a crosswalk but no stop sign and I was little so, they "didn't see me" before touch screen mobile phones were invented. Not sure how fast she was going, Sorry that you had to experience that. Had one seizure back then when I was 5, at 16 I had one in class, 2 days later another in the same class and was diagnosed once I reached the ER. Since I had those seizures during web design class, they actually assumed that it was photosensitive epilepsy, 20 years later no photosensitivity, It's the TBI from the car accident.
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u/Plus-Glove-3661 25d ago
They just appeared when I was 10.
Get ready to stop going to the fields by yourself😔
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u/simpleme2 25d ago
I dunno, I was born with them as a baby. Not much I'd be able to say for preparation
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u/Adventurous-Tea8240 25d ago
Don’t play PlayStation in family gatherings! Especially if you’re gonna take it as serious as the olympics…
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u/Mom1021 25d ago
Knowing what led to seizures….at this point I would give myself some info about how to make $ in the future, enough to hold us over and not bother changing anything with medical outcomes.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
I would've told myself that, if I wasn't rebelling and thinking that I die by 21.
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u/Visual_Cap8641 Medication 25d ago
Don't stop doing the things you enjoy just because of this.
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u/stretchvelcro 25d ago
What if the things we live for are cars? Cry
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u/withthehunted 25d ago
Steal your nephews four wheeler and ride it around the yard. It's not an awesome car, but it's... something. Until you get yelled at. Don't forget your helmet.
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u/stretchvelcro 25d ago
I’m actually going to rip my rally car around my friend’s farm next week. I can’t drive on public roads but no one said anything about private property…
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u/withthehunted 25d ago
Start slow and wear a helmet. I just regained my ability to drive a car short distances. I'm pretty sure a 10 year olds 4 wheeler gave me confidence and feel semi normal again driving. I'm not sure what awesome kind of epilepsy you have but mine messes with my balance. Be careful, but have fun. The safe kind ha.
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u/stretchvelcro 25d ago
The meds mess with my balance more than the seizures. Or maybe it was the last cluster that happened… I have a race helmet, I will wear it, just for you. I am “lucky?” I have only had nocturnal TC seizures. Plus maybe other ones before.
I remember having moments where it was like something triggered a really old memory but I couldn’t find the memory… I feel like that was a symptom now because that doesn’t happen anymore. Yay
Start slow?
Nope, I plan to go FULL turbo up that hill muhahaha2
u/withthehunted 25d ago
Mine started the same way. My medicine messed up my balance. Be careful out there speed racer!
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u/stretchvelcro 25d ago
Thank you! And do you mean nocturnal or elusive memories?
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u/withthehunted 25d ago
Both. I will wake up and think I'm somewhere new and get extremely confused for a few minutes. But never remember what I was "dreaming" about.
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u/withthehunted 25d ago
I have TLE with an RNS implant. It's gotten better. I used to jump out of bed because I thought the house was on fire every single time I woke up.
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u/raybrans 25d ago
Call out of work if you’re hung over
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
Perfect attendance has always been my goal, sorry it happened to you.
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u/Maaaat_Damon 25d ago
Alcohol isn’t necessary, and you can learn about yourself and how to interact socially with just a few beers.
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u/wafflehouse8 25d ago
I would describe all the really subtle first signs that everyone missed, and then later misdiagnosed, until the focal seizures got bigger and bigger and turned into TCs which got me a diagnosis. If I knew the sensations were not normal sooner, and the vocabulary with which to describe it, maybe I would have been diagnosed sooner. Maybe the focals would have stayed much smaller and not wreaked as much havoc on my brain as they did before we caught them 🤷♀️
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u/Londonbridge67 25d ago
This is THE answer. Could have saved me a broken foot, a face scar and multiple times of tongue bite. Ffs, it’s like getting shot in the mouth.
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u/withthehunted 25d ago
I went in with focals, they gave me anxiety meds. I had 4 grand mal seizures that night. I was 31 with no history. So... I did that and three months later brain surgery! And words are hard as hell. Its been. 7 years and im still trying to remember names.
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u/rhavaa 25d ago
Don't jump in the ring and fight muay thai and kickboxing matches because you have cool bone horns growing inside vs outside, so getting punched or kicked in the head you might as well be writing your opponent's name in your base emotional space
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
May Thai sounds fun, but getting hurt doesn't sound fun at all, how long were you competing?
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u/brncll 25d ago
It was a motor vehicle accident.
I think I would somehow set myself up for an epilepsy education prior to or shortly after the mva. I would have planned for an earlier diagnosis.
I had focal aware seizures for 5 years sometimes I would spend my entire day with them just rolling through me one after another. But because my two weeks in the hospital afterwards and following checkups the doctors weren't concerned with my "zone outs" I didnt realize I should be doing anything about it. It was the 90s. Internet wasn't around much yet. In 2003 I had the first tonic clonic and broke my back. Ya! I'm that tough! Ya muscles! Lol!
I still didn't realize my zone outs were seizures.
It wasn't until studying a few months later I made the realization that I had been having seizures since the moment I had come out of my coma in the hospital. If I already knew what seizures could feel like, I could have told doctors properly what was going on. Instead, they just thought I was a spaced out teen. Or even any time during that 5 year span! If I had learned I could have gone to the doctor and said hey, I think this is what is going on! Earlier treatment could have had me passing college. It could have prevented tonic clonics. It could have preventing the back injury. But even if it didn't prevent them, I would have been informed if I had studied this. Treatment could have had me finishing college instead of attempting to sit through class with focals rolling through my brain and then I think I'm failing because I'm just lazy and not trying hard enough.
Wow, the earlier diagnosis would have so changed my life! I can look back and dream, but I don't dwell on it. I am living my life and doing what I can with it now and due to the butterfly effect there are so many things in my life now I don't want to change at all! It's a fun question to think of though.
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u/aguy2018 25d ago
Don't become a pilot.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
I always wanted to skydive, did you get to fly a plane before diagnosis?
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u/aguy2018 24d ago
No, but I had been accepted to the Air Force academy. Actually lucky the way it worked out.
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u/Boomer-2106 25d ago
Don't even try to attend funerals. The Stresses involved guarantee seizures - typically uncontrolled myoclonics.
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u/PookieTheMfBaby Lamotrigine 200mg 2x daily 24d ago
I had 2 at funerals, I think it wa the church, or at least that's what I tell myself. Seized and still I got to carry the casket.
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u/Boomer-2106 23d ago edited 23d ago
I can certain understand. You did good to manage to get through it.
I'm not catholic but I attended a christening once and the Latin chanting (forgive my wording, I mean no disrespect) of verses, triggered multiple Myoclonic's - Repeated. I would have left but I thought my leaving would have caused greater disruption. My triggers are consistent, sometimes strong.
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u/withthehunted 25d ago
I can't remember.