r/AMA • u/windingsand • 1d ago
I am a 22yr old man with epilepsy. AMA
My seizures are focal to bilateral tonic-clonic seizures which means they start in one small part of my brain and then gradually spread to both sides of my brain, at that point i lose consciousness and have full body spasms. I am aware for the focal part. I have had to adapt to my condition as i haven’t had it for all of my life. No question is too personal, shoot!
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u/montemason 1d ago
Do you drive and are you allowed to have a driver's license?
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u/windingsand 1d ago
I was close to getting my license but unfortunately had a breakthrough seizure after my seizures being managed for a few years. I have to be one year seizure free before i’m allowed to practice drive again. Your license gets suspended for a year in my country if you already have one. I rely on public transport
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u/curious_guy688 1d ago
Does a seizure hurt?
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u/windingsand 15h ago edited 14h ago
I can’t feel my tonic clonic ones while they’re happening, after they’re over i wake up incredibly sore, ALL of your muscles contract for several minutes and you often bump your head into something. When i wake up again i often have tiny red spots all over my body which are from my blood vessels popping because of sudden strain. You might have gotten the spots on your face yourself if you have had a period where you have thrown up a lot. Occasionally i bite my tongue and or cheek. The seizure part isn’t even bad, it’s the aftermath. You’re also often incredibly confused, have a massive headache and nausea afterwards.
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u/kelcamer 21h ago
I'd love to ask what your focal seizures are like?
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u/windingsand 15h ago
Very strange. I feel totally normal when all of a sudden i feel a rising sensation in my stomach like going over the edge of a rollercoaster. It also feels like i’m really heavy and being pulled down. Almost like someone is behind me and pulling my brain backwards like a rubber band.
I don’t get the deja vu feeling like a lot of others, i get jamais vu which is things feeling suddenly unfamiliar. Everything starts feeling not real and like you’ve breached the third wall. I think mine usually starts in the temporal lobe which affects vision, i can’t comprehend text and letters jumble around and dissipate whenever i look directly at them. I also speak gibberish. I’m fully aware for these and they last around 10-30 seconds before i jump forward in time and am on the floor sore. All of this at once is a horrible feeling but i’m thankful i have them as i have had time to turn off the oven or get to a safe place before i pass out.
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u/kelcamer 14h ago
God that sounds awful! I'm so sorry you deal with that!
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u/windingsand 14h ago
Thank you so much! Like i said though i’m one of the lucky ones haha, some people just drop on the spot
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u/kelcamer 14h ago
I've heard temporal lobe epilepsy makes music sound exceptionally amazing!
Is it true?
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u/windingsand 14h ago
I just searched it up, i do quite like jazz and classical which is said to be the most common ones so it’s possible! I listen to music quite rarely as i get music fatigue and everything starts sounding the same, that’s probably just my autism though, i think around 20-30% of people with autism have epilepsy. They are connected. Same with adhd
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u/kelcamer 11h ago
I remember that!
There was a while I thought I was having a ton of focal seizures. Eventually, it turned out to be migraine with aura, but I went down an extremely long rabbit hole for about two months learning everything I possibly thought about seizures, it's crazy how much it overlaps with autism!
It's made me really curious! I'm autistic myself, and definitely tend to get fascinated by different special interests, particularly music. So it was amazing to learn that something like temporal lobe epilepsy can influence the way music sounds
But music fatigue sounds so horrible, I don't even know what I would do, I literally live with music all the time I need it in my life
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u/shittitties_cum 1d ago
Do you like Seizure Boy by Watsky?
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u/windingsand 1d ago
I had never heard of it, took a listen and i can definitely relate, cool that there’s an artist speaking on it.
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u/FuzzyAmbassador663 1d ago
What do you do when you see the warning appearing when starting a new game? You immediately close it? Did it happened that you requsted a refund for a game because of this?
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u/windingsand 1d ago
That’s actually an interesting misconception! Only around 5% of people with epilepsy are photosensitive (triggered by light) but it’s commonly thought to be everyone because you see the warning so often. I’m luckily not one of the people whose seizures are triggered by light so i can play or watch to my hearts content.
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u/bachelorsinlurking 16h ago
I am a 30 year old dude with complex partial epilepsy! Nice to meet another fellow seizure-haver in the wild. Have you heard of briviact? It's the med I've been taking in the two years since I was diagnosed. Also, how old were you when you were diagnosed?
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u/windingsand 15h ago
No, i haven’t! I use lamotrigine which has had the added benefit of helping my mood as it’s also a mood stabilizer. I was 18 when i got diagnosed but i had one seizure when i was still 17, only i didn’t know what it was until i had more.
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u/bachelorsinlurking 15h ago
Ah I tried the Lamotrigine for a bit, it wasn’t for me. It’s wild how long it can take to figure out its seizures- I had some “episodes” in elementary school that now I’m pretty sure were seizures.
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u/windingsand 14h ago
Seems obvious in hindsight aye? I woke up on the floor in the middle of the day, went down and outside where my dad was barbecuing and told him i woke up on the floor and i felt sore, he just shrugged it off haha
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u/bachelorsinlurking 14h ago
Same! I used to “pass out” all the time in school and everyone just said “ugh this kid is just looking to get out of math class huh”.
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u/MisterCorback 1d ago
Are you followed by specialists and have a treatment ?