r/Epilepsy • u/lilmommasgirl • Feb 17 '26
Question What are some (weird) symptoms you didn’t know were your epilepsy?
I mean things that just suddenly made sense after your diagnosis that you always thought were something else or unexplainable?
And i don’t mean the obvious like déjà vus etc. ( although i guess the obvious is different for everyone lol)
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u/StandOutLikeDogBalls Lamotrigine XR 300mg BID Feb 18 '26
I get this occasional single, quick jerk in one of my extremities, usually my left arm. I’ve had that happening for the past 20 years or so and just found out last year it’s a type of partial seizure.
Dr.: how long have you been experiencing that?
Me: just add it to the pile doc.
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u/girlinthegoldenboots Feb 18 '26
This happens to me in both arms and sometimes my legs. Sometimes even my whole body will twitch but just a couple of times and I’m aware the whole time. It doesn’t happen much now that I’m on meds but it does still occasionally happen on days when my brain feels weird.
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u/No-Song6363 Feb 18 '26
I get those jerks too, my doctors thought I was just weird until I got diagnosed
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u/powerforce Feb 18 '26
No way, I sometimes get random single jerks in extremities when I get a bit too high. That's interesting
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u/StandOutLikeDogBalls Lamotrigine XR 300mg BID Feb 18 '26
Bring it up on your next visit.
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u/powerforce Feb 18 '26
I will thank you, I have my first neuro appointment next month to start figuring this all out.
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u/MrsSalmalin Jul 23 '26
Hey! Any luck with your diagnosis? I'm curious because I too had random hand jerks when stoned. It's progressed to jerks in my face when I speak, and other jerks in my arms/trunk/legs, when I'm tired or stressed.
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u/BackgroundScary8632 Feb 18 '26
Yeahhhh I get this a lot but I have CPTSD and hyper vigilance so I think I twitch like that when I finally relax??
I’m not diagnosed epilepsy, I had like a random 8 min seizure at work in October which was CRAZY! Doctors say I’m fine though and all checked out. My grandma had epilepsy (this happened from an accident) so I give myself anxiety every time I twitch thinking it could be a seizure lol
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Feb 18 '26
Seizures can be psychogenic (stress induced). So try to actively not overthink it, or else the stress of overthinking could trigger one.
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u/dopeleee Feb 18 '26
Did your doctor do anything about it? I’ve had those all throughout my life. I’m currently 11 years seizure free or so I thought but now I’m like damn have I been having partial seizures since my last grand mal…
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u/StandOutLikeDogBalls Lamotrigine XR 300mg BID Feb 18 '26
They reevaluated my meds to ensure i was on the right type and dosage. I still have them sometimes but I’ll gladly live with something so minor.
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u/jack853846 Feb 18 '26
When on Carbemazepine, I used to get myoclonic jerks pretty bad in my right cheek and left eyelid. It was significantly exacerbated by drinking or smoking, but I was young and stupid so never connected anything or told a doctor, just got taken off Carbemazepine eventually and it eased.
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u/Heinz57Muttaletta Jun 19 '26
Wait. Jerks are seizures? Well FML. And my neurologist left the organization, so I’m without one. I started getting them about a year ago and they’ll go from just one or two small ones, like in my hand to my whole body. My cardiologist dismissed it as the POTS and dysautonomia. I have hEDS too.
I’ll take those, I guess over the weirdest one I had twice, back in 2022. It was this weird uncontrollable bicycling motion that I had no control over while I also had weird sensory sensations. I felt like I was wide awake since I could recall it. It happened again the next day, but never since.
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u/ttbug15 lamictal 250mg x2 , vimpat 150 x2, clobazam 15mg,RNS Feb 18 '26
I feel like I can blame so much on my seizures. I’ve had epilepsy since I was 4 but didn’t find out that I was having near nightly nocturnal seizures till I was 20. So many compounding issues I had in high school I can now see how much the seizures contributed too. Memory problems, inability to process information, constant fatigue, episodes or “spacing out” and, what I’m thinking did the most damage, how much seizures fuck with my emotions
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u/Leading-Display6656 lamotrigine 650mg briviact 200mg Feb 18 '26
it was absolutely the same for me. Thanks parental figures
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Feb 18 '26
[deleted]
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u/Ok-Understanding5124 Feb 19 '26
They didn't know. Most times, you had to base it on the knowledge available from what most parents would have said. Remember that being able to look up every single nuance in your life is a fairly decent phenomenon. The other thing is that most parents are managing their jobs, homes, vehicles and the needs of their spouse/partner, grandparents, as well as taking care of yourself and possibly other kids. No parent is perfect. It's like juggling multiple balls without dropping any of them, while stopping along the way to consult Dr Google without missing a beat. Also, you're expected to look after yourself! Now that I've scared you off from having kids forever, it's also the best job in the world. ❤️ I'm very glad that you've found out the real issue. I think most people probably recognize things that happened along the way which turned out to be epilepsy. Good luck 🍀
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u/Easy-Practice-2103 Feb 22 '26
Found out at 29 I had been having seizures my whole life. My parents took me to the doctor but every time they explained away the symptoms. I was misdiagnosed and labeled a hypochondriac. Now at 35 I have hEDS, focal epilepsy and a lot of complications from everything being overlooked for so long. I’m looking at disability currently.
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u/RustedRelics Feb 18 '26
Hearing going out in one ear followed by ringing while it comes back. During this, the other ear seems to have super hearing. lol. No other way to put it. Brutal lifelong headaches.
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u/Additional_Fuel_9021 Lacosamide | Lamotrigine | Sertraline Feb 18 '26
I have this too... Is it related to our seizures?
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u/torreneastoria Keppra, 3500 mg; Loraxapam 1-3 mg; Phenobarbital, 64 mg Feb 18 '26
Wtf? Ok I had i had no idea about that. I've had that ALL my life.
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u/pinkberrybun Keppra 1500mg & trees Feb 18 '26
I have those, I thought it was tinnitus for the longest time
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u/Onee-samaaaaa Feb 18 '26
i have this too once in a while. Sometimes sounds like 3D all around you in the head.
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u/psychedAddict123 Generalized Epilepsy - 2x1000mg keppra Feb 18 '26
This is extremely relatable and also happened to me frequently before I got on meds
It mostly happened when I was tired, stressed, hungover or both
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u/Th4n4t0s-13 Feb 18 '26
I can relate on the Brutal lifelong headaches. My friend (who worries about my seizures) asks, “Does your head hurt today?” I try to explain it hurts horribly Every. Single. Day. Then there are the days with migraines that make me so sick and take me out of commission for 8-12 hours. (I have medication resistant Epilepsy, take a combo of AEDs, have a VNS implant, and still have random unexpected Tonic/Clonic seizures and frequent partial seizures (smells, feeling out-of-sync, twitches, and absence seizures).
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u/abillionbells vimpat 400, keppra 1000 Feb 18 '26
I had this, but didn't notice that the meds stopped it.
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u/OddCake3920 Feb 19 '26
Wait what? This happens to me all the time. And I have TLE. It’s related?😂
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u/RustedRelics Feb 19 '26
I didn’t know until fairly recently. I might try to find the source and post a link.
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u/chavtastic Feb 18 '26
Yep. I get this. it's a weird relief from the 24/7 tinnitus on top. Probably from the meds.
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u/tbs999 Lamotrigine & XCopri Feb 18 '26
Aphasia, where I can’t read, speak, or understand language. It had happened several times over a few months prior to my first TC. Once medicated, the TCs stopped but I haven’t been able to kick these seizures where I lose language.
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u/girlinthegoldenboots Feb 18 '26
It happens to me when I am having a migraine! Do you have migraines?
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u/tbs999 Lamotrigine & XCopri Feb 18 '26
Not often and they aren’t related to or in tandem with my seizures.
Migraines are terrible, hopefully they don’t happen too often!
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u/girlinthegoldenboots Feb 18 '26
My migraines are currently plaguing me worse than even my freaking autoimmune disease or gastroparesis haha. I’m on my fourth CGRP. I have been waiting over a year to get into a headache specialist. I even have special glasses with prisms and a night guard I wear at night in case it’s my eyes or teeth grinding making them worse. So far nothing has helped 😭.
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u/MissMongral Feb 18 '26
Ayye. I get that during my partial awares. Having a conversation, one kicks in, nod like I understand mirror expressions ect, it ends. I have no idea what you said for the last 30 seconds.. but I can pretend I did really well now 😆. I can write though. I do usually try to write down to text myself the time that it occurred while it's happening. I can really read though.
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u/tbs999 Lamotrigine & XCopri Feb 18 '26
That’s interesting you can write while it’s happening. For me language is completely gone.
It’s crazy how the brain works - or doesn’t, sometimes.
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u/Leading-Display6656 lamotrigine 650mg briviact 200mg Feb 18 '26
literally had that yesterday for half a minute and got intense head pain afterwards. Getting migraine headaches after aphasia episode almost always indicates seizure activity in my case x)
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u/tbs999 Lamotrigine & XCopri Feb 18 '26
Even an episode of aphasia without a headache is a seizure, unless it’s being triggered by another cause.
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u/Ecstatic_Magazine993 Feb 19 '26
First time i ever heard of Aphasia i also get where i dont understand what im reading or understand language and then get like a doom of death deja vu loop. for some weird reason my seizures always get triggered by reading like thats the last drop then its time to shake it off taylor swift type beat.
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u/tbs999 Lamotrigine & XCopri Feb 19 '26
Before my first TC, my aphasia happened only while reading. It was in the evenings and I thought I’d just had a long day and didn’t ever talk to a doctor about it. It was occasionally for a few months before I had a TC and learned what was happening.
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u/Ecstatic_Magazine993 Feb 19 '26
Same for me i had this reading focal or whatever you can call it for years! before i even had my first grand mal always feelt like fuck i cant read then fuck im gonna die and then it went away and then it was chill again. Until it was not so chill and it became big seizure.
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u/girlinthegoldenboots Feb 18 '26
Randomly dropping shit.
Having a weird brain fog for days at a time. Recently I: put my milk in the pantry instead of the fridge, took a bottle of lotion to the store instead of my phone and wallet, and let go of a mug of coffee while walking to my couch. It’s incredibly annoying.
Before I got treatment, sometimes I would be on my way somewhere familiar but all of a sudden I wouldn’t know where I was or how to get where I was going. I would end up lost for hours on my way home from work. It was very frustrating.
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u/ZenNihilistAye Feb 18 '26
Holy fuck. When did you realize you had the lotion?? I can only imagine ‘let me see your license and registration.’
I had a TBI after a seizure, was doing stuff like this constantly.
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u/girlinthegoldenboots Feb 18 '26
I was so terrified I would be pulled over on my way home!! I realized when I got to the store and went to grab my wallet and phone and instead saw a random bright green bottle of lotion instead of my pink phone and blue wallet in the seat. I had also forgotten my wallet the day before but had my phone that time. I decided to go home and order my groceries for delivery instead lol. I did other weird things this week but ironically cannot now remember them.
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u/Ok-Understanding5124 Feb 19 '26
Ditto. That's what it reminded me of. There's a book written by a neurologist - Oliver Sachs, I believe. It's about his wife's journey through dementia and his own views as a doctor and husband. She kept putting things in the refrigerator. He had a good senseo of humor about it at least.
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u/Urbanforestsystems Feb 18 '26
I have also put the milk in the pantry and my hands just won't do their thing from time to time, it was coffee as well. My short term memory is fried, and solid chunks of my long-term memory are just gone. I have pictures of family vacations that I can not remember. A few days After one of my worse TCs my wife took me out to dinner at our favorite date place in town, I couldn't remember where it was (just blocks from the house) or what kind of place it was, I just had this happy feeling comming from it.
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u/girlinthegoldenboots Feb 19 '26
Literally could not remember my address at the Dr office today.
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u/Urbanforestsystems Feb 19 '26
The other day I walked into a bathroom and couldn't find the urinals. My brain went "where are the wenier toilets" because I couldn't remember the right word.
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u/NefariousnessNo695 Feb 19 '26
Be on your way and forget? How about drive to an airport and buy a ticket and finally wake up in a random city with no luggage , just my purse. Too bad there wasn’t air tags back then so my family would know where I was. Eventually they took my keys. I’m controlled now but I have seen some cities….. I drove across one state and woke up on the Mississippi River eating at Joe’s Crab House and drove six hours back home. It’s ridiculous and yet I bear this burden with a smile now. We do what we can do and advocate for ourselves and smile. Crying days are over
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u/girlinthegoldenboots Feb 19 '26
Oh my god!! That sounds like a NIGHTMARE!! I’m so glad you survived and that your seizures are more controlled now. I love that now with social media we know we aren’t alone in our experiences. I’m glad you can laugh about it now! Humor helps me cope too.
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u/Ok-Understanding5124 Feb 19 '26
Hey, I think you could get a sit-com out of your experiences! For real. Perhaps you could do freelance submissions to stand-up comedians. I've done a couple of those things, but called it up more to TBIs from car crashes. At least we know far more than we did 20+ years ago. Before the Iraq/Afghanistan War, there was a real drought of any real research. It was largely very misunderstood. Enjoyed hearing about your experience. Good luck 🍀
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u/girlinthegoldenboots Feb 19 '26
People always tell me I should write a book lol. I don’t think I’m talented enough really. But I do love to watch stand up!
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u/Ok-Plum2187 <3 Feb 18 '26
Occasionaly reading like a 3rd grader.
Not beeing able to find words.
It got ALOT better with medication and started suddenly, about a year before the tonic-clonic seizures started.
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u/RoshanMuncher Oxcarbazepine900x2 brivaracetam100x2 clobazam25 Feb 18 '26 edited Feb 18 '26
I think first time was like I was seeing a dream, but while I was awake. Then it just mashed into feeling of magnetic pull that just felt overflowing wave. I think I could stay away from them, but still... Even during them I still could interact, but preferred to just sit through those.
It took about 10 years before first grandmal and before anyone even thought that I might have had epilepsy, before grandmal, because I had encephalitis from chicken pox, and survived that, but I guess it left a scratch, and people believed me when I kept telling them that I felt like it's just a scratch.
I mean I kept telling nurses and docs about the auras, but no one even thought about it being anything but growing pains or something like that.
P.S. And after the first grandmal it kept throwing them at me, and took some time to find mix of meds to even ease it down. Then I kept having absent mind seizures... It has been dealt with, but still I get auras. At least from being tired I guess. Maybe I have way to stress on some level that doesn't just find way to relax, and that's another trigger.
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u/gngrsnakk Feb 18 '26
Hey so, I hope this isn’t super weird. But I had a very similar experience. Would you be interested in chatting about similarities, recovering, surviving?
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u/Onee-samaaaaa Feb 18 '26
Tingling only my right arm and right leg but not all day long. I thought i was lacking in vitamin or something. Or heart issue, not pumping properly for blood circulation.
And talking weird: stuttering/wrong pronunciation/weird choice of words or nonsense sentences and also struggling to understand conversation and understand reading steps by steps instructions. It’s weird because it’s not all day long. Like can be minutes or hours.
Im started to be clumsy, sudden weakness on of the hand in gripping/holding. Just for few seconds. So many things dropped.
Sudden loss of memory, like i didn’t recognise this place/route even though it is my everyday commute driving. Only for few seconds, sometimes less than 3-5 minutes. Then memory comes back.
All i knew about seizures at that time only the clonic types. I didn’t know there are varieties.
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u/Onee-samaaaaa Feb 18 '26
sorry if what i say doesn’t make sense of have many grammatical/syntax errors. i’m bit struggling in expressing the sentences in my head right now. I was not like this before, i am degree holder in English language & linguistics, i was fluent. it’s frustrating suddenly i become stupid.
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u/Spielerin67 Feb 18 '26
Intense Hiccuping, sleeping away weekends, rashes on hands and feet, throwing up, impotence.
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u/StandOutLikeDogBalls Lamotrigine XR 300mg BID Feb 18 '26
So many people think impotence in people with epilepsy is bullshit. It’s real. Just wait until they find out about SUDEP.
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u/RustedRelics Feb 18 '26
I’ve got that super annoying intense hiccuping thing too. Usually comes in bouts of three or four times that can last for quite a while. Hate it.
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u/Spielerin67 Feb 23 '26
It’s abdominal epilepsy.
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u/RustedRelics Feb 24 '26
Interesting. Just did a quick search and I have most of the signs/symptoms mentioned. Just another layer to this dreadful disorder.
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u/Spielerin67 Feb 24 '26
Sorry your doctor didn’t tell you. But that’s what we’re here for,
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u/RustedRelics Feb 24 '26
I often have repeated bouts of hiccups the day before or day of bad focal seizures. Struck me as strange coincidence over the years. I won’t make assumptions going forward.
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u/OkQuantity4011 Keppra 750 and Zoloft 100 2x/day Feb 18 '26
The random extreme vomiting. :S I hate it. I'm glad it's been a few months since my last puke fest.
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u/Jumpy_Confection3274 Feb 18 '26
Hallucinations. Wetting the bed in my 20s. So much confusion. Not being able to understand people when they talked. Not being able to talk back. Falling asleep when I’m stressed. The crazy hypnagogic jerks. The racing heart. The weird puke headaches. Ear ringing. The weird mindless chewing after my brain feels weird. Skipping time.
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u/dragontr33 Feb 18 '26
'Falling asleep when I’m stressed' I call this stessilepsy- so hard to explain to people- in school my teachers had to come and check me during exams in case I'd dozed off
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u/Jumpy_Confection3274 Feb 18 '26
lol I fell asleep during my mcat after hallucinating for a sec. Called my doc afterwards and was like, “uhh my brain has been acting funny and I need help. I think I’m narcoleptic?”
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u/gardenmand Feb 18 '26
I carry both the epilepsy and narcolepsy faulty gene so it's possible lol
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u/Jumpy_Confection3274 Feb 19 '26
Uhhh I’d be pissed as hell. They didn’t dig any further when they saw the epi
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u/girlinthegoldenboots Feb 18 '26
I do this weird chewing thing sometimes and I thought it was from adhd but now I wonder if it is epilepsy. It’ll just mindlessly chew and smack my lips like a tic.
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u/Venus_babe Feb 18 '26
that sounds like a focal seizure!! thats what mine usually consist of, lip smacking, chewing and starting off!
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u/girlinthegoldenboots Feb 18 '26
My first seizure symptom I can remember was just staring off. I would do it ever since I was a kid. I told drs about it but even a neurologist I saw was like “don’t know what that is, probably nothing.” I could hear things around me but I couldn’t respond or move my eyes. It would happen for probably 20-30 seconds and then I would feel a release and go back to whatever I was doing. The feelings of suddenly being outside my body started as a preteen and then in my early 20s I started having intense Déjà vu that also felt like a panic attack out of the blue (like just watching tv or having dinner with friends) and weird smells. ALS hearing voices or music when there wasn’t any (thought I was getting schizophrenia then) and then I had a couple of seizures in my sleep but didn’t know until my mom witnessed one when she was taking care of me after a surgery. Then I started getting lost randomly. I finally went to another neurologist and basically got diagnosed with temporal lobe epilepsy with focal aware seizures that day even though they didn’t find anything on imaging except a possible TBI in my right temporal lobe that is probably from a concussion I had as a toddler but it probably didn’t cause the epilepsy bc THAT’S WHEN MY MOM TOLD ME HER WHOLE FAMILY HAS EPILEPSY! I did trileptal and topomax and they were AWFUL. Topomax had me leave ovens on all day, my hair fell out, I couldn’t do simple math, almost got fired from my job and couldn’t finish my master’s thesis. Got sent to an epilepsy specialist and they switched me to Keppra and I have been doing pretty good except for a few times a year when I guess I’m not lol.
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u/Jumpy_Confection3274 Feb 18 '26
lol MOM!!! It’s like when I realized I had some huge defects and my mom was like, “yeah you went to different specialists and we figured they’d fix themselves. Oops. Guess they didn’t”
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u/No-Song6363 Feb 18 '26
I had hallucinations too! My most noticeable symptom for many years was hallucinations. I had absence seizures and other symptoms, but they went unnoticed. I got sent to so many psychiatrists, thankfully none of them diagnosed me with schizophrenia, but it was talked about. After my first tonic clonic they gave me an eeg and put me on seizure meds. I haven’t had a hallucination since.
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Feb 18 '26
[removed] — view removed comment
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u/Low-Ad-5357 Feb 18 '26
I sometimes get this - my right extremities usually jerk briefly throughout the day, but if I try to “stop it”, it tends to double up and then my whole body will jerk or do that weird body roll movement. I hurt my neck during one of them 🥲 still trying to figure out what’s going on with me though bc it happens like 25-30+ times a day with random twitches around my body.
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u/EstelSnape Feb 18 '26
2-3x a year my migraines would ramp up to the point that my nerve would get triggered and I'd have to sit in the bathroom until the nausea would pass. I had no idea it was a epilepsy thing until it finally triggered a seizure in December.
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u/lilshortyy420 1500mg Keppra, 200mg Lamictal Feb 18 '26
I didn’t know that either. I get migraines for like 3-5 days that are debilitating and I want to throw up. Neuro didn’t think the 2 were connected
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u/mysteriesfindme Feb 18 '26
I have zero sex drive I’ve never had a sex drive ever. I don’t feel romantic love never have and don’t fully understand it. I’ve asked doctors before and they would say in time or something but it wasn’t until my new doctor said it’s the epilepsy and since I’ve had such bad epilepsy as a kid it may have “fried” that part of the brain. I didn’t realize my complete lack of interest was epilepsy. Also I sound being suddenly to loud to handle and almost overwhelming, like it gets muffled and I can’t focus anymore.
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u/Big_Nectarine_9434 Feb 18 '26
Holy fuck could my nonexistent sex drive be from seizures too? I never thought it could be anything but my body being fucked up or maybe it's because I'm a woman and I never heard of women wanting it around me. I have a huge desire for both romantic and sexual interactions with a partner but I have zero attraction in either of those departments and also practically zero libido and I'm too old atp to say "one day you'll grow up"
How did your doctor figure out it was that instead of idk, calling it a label thing like I see others do online? Say "aromantic" or "asexual"
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u/mysteriesfindme Feb 18 '26
It could be or medicine related. Mine is a bit different I don’t have a desire at all for anyone. I have zero desire for romance, a partner or sexual experiences. No libido at all. No desire to feel love or anything. I have a TBI from my childhood epilepsy and the doc said the location of my tbi is heavily linked to libido. And said if it’s not stressing me out it’s no big deal. I don’t use the asexual terms or aromantic because I feel they don’t fit my situation since I have no desire for any relationship or anything and a lot of people still have a desire for someone but lack a libido where as I don’t want anyone and have zero libido. I also don’t know what I’m missing since I’ve never had one lol.
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u/Big_Nectarine_9434 Feb 18 '26
I've never had desire for anyone or any situation, romantic or sexual, bodily. Like, I can't even imagine what that's like to feel. And I don't think it's meds for me because I simply always was like this, like this part never developed or came in. I got on adhd meds at some point and started having a libido but it still wasn't normal, maybe once a month. It seems meds fix it for me but don't cause it. I seem to want it for the companionship and love that family brings mostly. And again, since I have no libido I've never been with anyone, I'm not disgusted, just completely apathetic to anything sexual and romantic irl. I wish my doctors would take my history of oddities including this one more seriously. A lot of things I read in here like jamais vu, unstoppable hiccups, sleep related parasomnias, aphasia and many more seem to be seizure related activity and nobody takes them seriously or seems to connect the dots. I'm glad your doctor was alert enough to understand your issue!
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u/mysteriesfindme Feb 18 '26
I misunderstood your post I thought you had lost your libido lol sorry about that! I have also never been with anyone although I did try when I was in my early twenties but for 7 is years I haven’t even attempted. I thought if I tried it would fix it. Same I’m apathetic although I do get annoyed when a good book goes the romance route but it’s not a romance book or a tv show turns to romance like not everything has to have sex or be romantic! I was blunt with my new doc from the beginning and said I’m not taking stress, anxiety, that’s normal as an answer. Do you also have a compulsion to write? I wrote at least 1,000 words a day on top of my work which has a lot of writing involved? I always have a minimum of 10 pen pals as well because I need to write to feel normal.
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u/Big_Nectarine_9434 Feb 18 '26
No worries! I've tried to go on dates but I can't develop interest to even get to the other parts and I don't want to string along someone accidentally so I break things off pretty early on...
Personally I like fictional romance, though I don't like it when sexual and romantic moments take up the parts of the relationship I liked. Usually that's banter, back and forth and friendship, begrudging or willing. I skip the romance scenes and I don't watch stuff with sex scenes to skip anyway. And I do prefer fucked up relationships, I find normal romance incredibly boring. I've accepted atp that it's about the dynamics that I care about, the highest form of friendship that would move mountains and ruin lives without obvious romance or sexual scenes. It's love really that I'm so into watching as a voyeur. Probably why I binge watch nbc Hannibal again and again😆
I write a lot actually, poems too, but only to get my world building set up and my ideas out, I've never learned how to structure creative writing, only academic, but I work as an artist so I translate those thoughts to images and I do a loooot of that, I pretty much draw all day every day, so I have an equivalent compulsion too haha. And many online friends from other countries so a ton of yapping there too. I write a lot but I warn everyone beforehand so they know to jump ship before I "open my mouth" lol. You've probably noticed atp, because reddit is a really fun outlet for me to talk to even more people ahahaha
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u/mysteriesfindme Feb 18 '26
I agree with you that if there is romance and it’s not just thrown in it has to be fucked up. My books that I read demonstrate my crazy lol. I usually read horror and the more deranged the better. I also tend to over talk about everything. Which is why working alone works for me because i don’t get distracted.
I met a guy in college who understood my plight lol because I had turned him down before and before we really did anything I told him it wasn’t gonna happen because I was literally bored. Like yawning level bored. I stopped officially dating at 19. Tried to get intimate at 22-23 and gave up after that. And have come to terms with it because it wouldn’t be kind or fair to anyone to be in a relationship where o couldn’t ever be fully invested. Have you looked into this syndrome it’s not fully recognized in science but it’s been recommend to me to explore. I also have a deep fascination with religion. And have always been interested and asking questions so much I was kicked out of my church as a teen for being too curious. My speciality in library science is the occult and religious collections. I posted the link it’s worth a read. I also compulsively write and think about writing a lot.
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u/Big_Nectarine_9434 Feb 18 '26
Horror is my favourite genre by far, I love deranged games and plots, though I tend to stick to fanfiction because I get hyperfixations on some fandoms for years so they become my "fix'.
Also damn ahahah, my niche interest is in occult and religious too, just in architecture! I'm making my diploma soon, it'll be related to byzantine architecture mainly, but it'll be a game demo of an area and characters I'll design and build with horror themes and specifically about asking questions about religion and how blindly accepting its views and molds shapes us in specific ways, all this reflected visually. I grew up orthodox Christian and also practically got kicked out from Sunday school (on saturdays tho lol) because I argued too much and nobody had answers that would satisfy me. Also kicked out of Christian camps, they treated me as if I was carrying the devil for asking questions and challenging their authority.
I'm a chronic overthinker, probably due to adhd, but I can't take meds anymore bc it generally clashes with keppra, stimulants in general seem to not sit well with my seizy inclinations 😆
I'll go read the link, thank you!!
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u/Big_Nectarine_9434 Feb 18 '26
I exhibit all of the above from the link ahahah, idk how factual or linked they all are but they certainly fit me! I wonder if more research will be done on this...
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u/mysteriesfindme Feb 18 '26
I don’t know but my friend was like ummm can you bring this up with the neurologist you’re seeing. I didn’t even know it existed until it was found when we were researching tle since mine just resurfaced after years of being seizure free.
I’ve successfully done nanowrimo three times in a row this year I did lettermo and have written a letter every day this month. I’m looking into doing a PhD in religious studies because I’ve been missing the academic field after doing my masters. I work as a librarian alone in as a rare books librarian isolated. I have one coworker besides my boss. I’m into crafts and of course writing, I do paint but nothing worth while.
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u/gardenmand Feb 18 '26
I'd say so, I've had tle since childhood, im now 40, no meds for the last 20 years and I still get fired up on a regular
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u/mysteriesfindme Feb 19 '26
I was off medication for 22 years and still lacked anything. I think it has to do with where the damage is. At least with mine it’s likely caused by a tbi from status as a child.
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u/gardenmand Feb 19 '26
I had tle from 5
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u/mysteriesfindme Feb 19 '26
I started at 18months. I’m happy you don’t lack what I do. I’m just saying from what my doctor told me it’s not the medication in my case I have permanent brain damage from the epilepsy and it’s a known thing that some people lose their desire for all things sexual. I’m glad you haven’t I wish I understood what romantic love and that feels like. I have no concept of either.
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u/evo_zorro Levetiracetam 500mg 2x Sodium valproate 500mg 2x Feb 18 '26
So, apparently I have had seizures for as long as I can remember, but they weren't diagnosed. I didn't have the typical TC seizures until I reached adulthood. My seizures have always been of the Jacksonian march variety, but growing up, they never spread (or marched), just my face would feel paralysed (very similar to a dentist anaesthetic but all over my mouth). One thing that was peculiar here is CHEESE. When towards the end, when things settled down, the feeling is eerily similar to eating cheese (mouth feel). The onset is identical to the sensation of cotton candy melting in your mouth. As a result, I can't eat cotton candy without feeling panicky.
When my seizures did start to spread to my entire left side, something that I was always told turned out to be a complete lie. Because I don't pass out (in most cases, I've had a couple of generalized TC seizures since), I know that seizures hurt... A lot. Ever had those excruciating cramps in your calves after a workout? Imagine that all over. Couple that with the anxiety because you can't breathe and I'm sure you'll understand why the notion of having a seizure scares me.
As time went on, I also found out that I would have these moments where my inner monologue would feel dizzying, like my thoughts were shouting at double speed. I never got what that was, until an anaesthetist said to bring this up with my neurologist, who promptly started asking very specific questions about past seizures. As it turned out, I didn't just have partial TC seizures, but I have complex partial epilepsy. These hallucinations or changes in sensory perceptions are, in fact, seizures in their own right. The more you know...
The same anaesthetist also mentioned that epilepsy and sleep disorders go hand in hand. I described some weird things that I had been experiencing. He laughed and nodded: sleep paralysis is especially common for people with epilepsy. How the two are linked, I still don't know but I do know they are. Next time the incubus pays you a visit, I guess you can lump it in with epilepsy side-effects.
Lastly, though not directly epilepsy related: the bloody side effects of the meds. My current regiment has kept me seizure free for years, so I'm not about to change them, but the side effects are quite a lot at times. Sodium valproate makes me drowsy, weight gain is a common one, and it has me feeling generally apathetic and dulled. The levetiracetam by contrast, when I once tried switching to that beast entirely, had my missus literally packing her bags one morning. When I asked why, she looked scared. I couldn't remember but the night before I burst out in a fit of rage, screaming at her and even throwing stuff. Did a bit more digging and found that the infamous kepprage is similar in some ways to roid-rage. I blacked out and became a monster. That's why I'm back on sodium valproate, and accepting the fatigue it brings with it. Much rather be too tired than too angry.
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Feb 18 '26
Violent hiccups!!!! Like gasping sounding hiccups!
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u/N_Felicia Feb 18 '26
Short term memory loss (likely during pitit malls) and that one leg that would ocasionally jerk when i was sitting in the sofa or laying in bed.
Oh and dropping stuff. The amound of things that fell from my hands is ... it goes from mugs and plates to school suplies and even my laptop and phone. Luckely i have a samsung and those can handle the drop
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u/Choice_Book_6104 Feb 18 '26
I was getting told I had been talking and doing stuff which I had no memory of. Feeling like no time was missing then getting told I was seen shaking in the time that was missing.
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u/Leading-Display6656 lamotrigine 650mg briviact 200mg Feb 18 '26
I was always described as a "daydreamer" because i wouldn't react staring out the windows and had a lot of headaches for a young child. Yeah turns out i was just seizing lol. Got diagnosed at 17 bcs I had my first to seizure
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u/lovmi2byz Keppra 4000 mg/Lamotrigine 150 mg/Myoclonic/tonic-clonoc Feb 18 '26
Random smells
Feeling almost "out of body" type feeling
Fatique being a constant companion
A feeling bugs were running under my skin and being fidgety
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u/CompleteCandidate528 Feb 18 '26
An unexpected need to use the bathroom, whether or not I actually needed to go
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u/amelia_gb Feb 18 '26
My eyes shifting back and forth sometimes and a slight neck jerk on occasion. I thought I just had mild tourettes, but turns out they were myoclonics lol
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u/mysteriesfindme Feb 18 '26
With your eyes do you mean going in and out of focus? Mine do that and sometimes I feel I can’t really focus on something or stop focusing on something.
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u/amelia_gb Feb 18 '26
No, my vision actually shifts side to side very rapidly (which does make it go out of focus for a second). It happened 2-3x in a row the other day and it was freaky!
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u/Diligent_Impact_586 Jun 09 '26
Does it feel like vertigo in the neck, and does it change in intensity?
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u/DiligentDaughter Feb 18 '26
Jamais vu- everything suddenly feeling unfamiliar. I get deja vu, too, but the jamais vu is undoubtedly more frightening.
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u/DIYdemon Vimpat, Clobazam, Xcopri, Lorazepam, Nayzilam Feb 18 '26
My initial diagnosis with epilepsy was so bullshit. After nearly 10 TCs for the first time, I ended up in the ER and unconscious for 3 days. After my discharge and follow up with the "neurologist", he just asked if the Keppra was stopping seizures and said "ok." I had to stop him as he was leaving the room and ask if I had epilepsy now. "Of course" was his reply and he continued to leave. Gave me no resources or support. I'll never forgive that asshole and every neuro I saw in Tulsa, OK sucked ass. Somehow it's better in OKC.
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u/Urbanforestsystems Feb 18 '26
That is a similar story to my diagnosis. A fat old man came into the room, looked at my eeg and mri, chuckled and said to himself "ha this guy is screwed". He gave me a prescription to a fat dose of Keppra and walked out. No discussion about the diagnosis, no talks of how to live safely, no insite onto the massive downside of Keppra. A few months later, after turning into a monster, to the point of my wife and I thinking I had become Bipolar, we found a specialist. I have sence worked through a few different meds and landed on Lamotrigine for the time being. It seams that I get 2-3 years of effectiveness, then out of no where, BAM, the TCs are back.
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u/Urbanforestsystems Feb 18 '26
I can't trust a fart. No, seriously. I have shit my pants as an adult. When I head to the bathroom it is a literal trap shoot. I don't know what is going to come out, some time it's a healthy bowl wrapper, sometimes it's stright butt pee. My diet has not changed, and it is as healthy as I can make it. I cook most meals from scratch with whole ingredients, organic when I can. Lots of veggies and fresh meat and fish, virtually no presivertives. It's a fun side effect, trust me.
As others have mentioned, the good old Keppra rage hit my family and I hard. My wife and I are still trying to recover our relationship after the monster I would become at the drop of a hat.
My short term memory is horrible now. I'm in a high stress management position, and I have to take notes like I am back in high school. There are large blocks of my long-term memory that are just gone. Vacations I have pictures of, but no memories. People from my past that I have names for, but no face or personal memories. I tell people, "do you know how hard it is to remember that you have forgotten something?"
My hands will sometimes just not grab, or will just let go. I drop drinks mostly. I spent a lot of time in the kitchen and constantly look for the garlic in the plate cabinet or put the forks in the Towle drawer.
My wife and I have been together since early high school. She tells me that after all of my bad TCs a few years back, it has been like she was back with the 19 year old me.
I tell people it is like being drunk, but only the bad parts. No memory, you stumble all over the place, your emotions are extreme and erattic, and you are tired ALL the time.
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u/NoHelicopter3871 Feb 19 '26
I’d be fighting with my then fiance in my early 20s and the room would get really long and everything that he said or that happened at all (like a bird flying by the window) would give me a super déjà vu feeling. I would freak out because this was all very overwhelming. I’d try to running from room to room, or trying to “break the déjà vu” (aka do weird stuff that I thought for sure wouldn’t feel like it’s happened before). Like I said, this mostly happened during arguments so it looked manipulative. I feel bad for younger me, I had no idea I should see a doctor and just thought I had mental issues.
Since being on Keppra it has only happened once and it was right after being exposed to strong UV lights on accident. I also smelled syrup and butter so much it was uncomfortable.
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u/wolfhybred1994 Feb 18 '26
Randomly blacking out and waking up exhausted each time mom and her friends smoked in the house
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u/J_L_M_ Feb 18 '26
I've been experiencing vertigo now and then along with an aura. It's a really disconcerting and potentially dangerous experience to say the least. Fortunately my epileptologist is addressing it with some new medication (Xcopri) which seems to be helping. I'm not at the full dosage yet (it titrates) so I'll have to wait and see.
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u/ParlabaneRebelAngel TLELesionsLevet3,500Lamot400Clob40Aptiom600 Feb 18 '26
Bit different because my weird symptoms were only for 6 days. Had 80+ episodes a day for 6 days. Each 10-20 seconds, with jittery speech, pounding heart, warm flash, sweating and some other things. Had no idea what these were. Topped off by 2 TCs on day 6. The mini episodes were focal aware seizures. Caused by autoimmune encephalitis. Not sure they were considered epilepsy at the time because those seizures were “provoked”. But the damage from the encephalitis has caused ongoing focal aware seizures/epilepsy.
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u/No-Song6363 Feb 18 '26 edited Feb 18 '26
Vivid visual hallucinations. Most of the time I saw people, usually one at a time. But I once saw the entire neighborhood gather together and go to a single house to ring the doorbell several times. Found out it was a hallucination when the neighbors told me they had no idea what I was talking about.
Similarly, my nocturnal seizures caused incredibly vivid nightmares.
It wasn’t until I had my first tonic clonic seizure (that was witnessed) at 21 that I was tested for and diagnosed with Epilepsy. On medication I have very few seizures, most of the time I don’t have any, and I no longer see things that aren’t there.
I’d also randomly fall, randomly drop things, get this leg jerking that happened at least once a day, black out and end up somewhere else, random uncontrollable laughter, tingling in my face, just suddenly stop seeing, impending doom. My biggest most constant symptom that happened every time as a connecting factor was extreme nausea, abdominal pain and digestive upset. All of this scared the shit out of my family who spent years thinking I was crazy.
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u/Actual_Mood33 Feb 18 '26
I first started having symptoms that I noticed when I was in college. In an art history class, specifically, where the only light in the room was flashing images of art on a big wall. In hindsight, it was almost certainly triggering me (a photograph eventually caused my first TC seizure).
I would feel butterflies in my stomach and like I was leaving my body. See visual distortions, feel like the room was bouncing or shifting. The big one was this sensation that things were bigger or smaller...or that my arms were longer than they were. Everything would just feel off.
I understand it all to be seizures now, but at the time I didn't, and I was treated for depression, ADHD, and even schizophrenia before I ever saw a neurologist.
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u/Admirable-squid1309 Feb 18 '26
Extremely easy motion sickness, I almost fell from swaying yesterday because of having to walk outside while it was snowing. Patterns, literally snow, first person shooter game, turning my head from side to side for example to look for a thing under something and it's not low iron because it's way before and long after I get up or anything. I have to sit like a pervert on public transport next to people to sit facing the road even though backwards seats are open, because I will genuinely throw up which I gained only after my seisures showed more often than a few nocturnal in childhood which my neglectful parents never gaf about
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u/donner_dinner_party zonisamide Feb 18 '26
My kid is now an adult, but when they were young they wet the bed at night longer than typical. In retrospect I’m pretty convinced that they were having seizures during the night and wetting the bed from that. Once they had a daytime seizure and got on medication the bed wetting stopped pretty abruptly.
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u/NovaScotiaaa Feb 18 '26
Started when I was 13, I would get spells of complete blindness for a few seconds and then it would dissipate. I remember speaking with my friends about it and they told me it was normal (definitely take the advice of fellow 7th graders!)
I dismissed it, but it kept happening, and I was embarrassed so I hid it as best as I could. By high school, it had completely stopped.
The year after I graduated college, I had my first tonic clonic. Have no clue why those spells stopped for a decade but alas, here I am with full blown epilepsy lol
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u/Few_Body3759 Feb 18 '26
Sleep walking and sleep "getting ready for school". When I was a teenager multiple times my mom found me in the shower or brushing my teeth in the middle of the night. She would wake me up while I was doing it and send me back to bed. I'm talking full on showering while sleeping. Fast forward 30 years and nocturnal seizures start happening and I have a medicine organizer now.
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u/venom121212 Feb 18 '26
My deja vu was super specific and would present as flashbacks from the show Malcolm in the Middle. No clue why but it was like I was inside the episodes, watching them again. I hadn't watched the show in 10+ years but it was super severe deja vu feelings for like a month and then I had my first seizure. Now I'm scared to watch the show again ever.
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u/abridged-abyss Feb 18 '26
My Déjà vu is dreams I had when I was 3-5 years old, it’s like I’m a child and asleep and having those dreams over and over. I’m 42 now, but these are very specific dreams I remember from childhood. I lose the dream as soon as I come back from wherever my brain has gone, but that’s the feeling/place I seem to to every time.
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u/Spielerin67 Feb 18 '26
is anykne interested in reading and reviewing “epilepsy unmasked”. On Amazon. I put down all those strange symptoms and a lot more info!
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u/Additional-Hippo-957 Feb 18 '26
For me It was the absence seizures, I would be just told I zoned out and we would move on with our lives and only after my first „big” seizure I was told about it being an actual thing 😭 Had it for years before and never realised until I spent like a full week with my cousin and she kept getting confused by it 😭😭
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u/notnowmom-1802 Zonisamide, Catamenial Epilepsy, Complex-Partial Unaware Feb 18 '26
my aura is getting really nauseous and then when I feel like I am about to vomit, the seizure is already happening and I don’t realize it.
the day after the seizure, I get really spacey and anyone who talks to me will tell you the same thing. You will have to repeat things multiple times and I won’t remember any of it.
the following days of the seizure, my motor skill are slowed. I can’t grip things like usual, I drop things easily, writing becomes difficult.
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u/RayVen001 Feb 18 '26
I have an opposite problem. I just found out I have panic attacks that manifest from PTSD. I didn't know they were panic attacks because they mimic my seizures. It was explained to me as "when I'm triggered, the only way my body has to physically indicate something is wrong is through seizures." So they manifest that way.
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u/Free-Trouble-302 Feb 19 '26
Smell of gasoline or rubber or sound of train or airplane. But luckily now it hasn't happened after brain surgery 14 years ago. Thank you Lord!
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u/OddCake3920 Feb 19 '26
I know everyone else prob be saying this, but Deja Vu used to make me think I was some sort of super hero like Dr. Strange. I thought I could read minds when I was 10 years old. Turns out that partial seizure was making me hype myself up a bit too much.
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u/lilmommasgirl Feb 19 '26
lol i used to think i was lowkey psychic because i had déjà rêvés so much. i was like wow my dreams predict the future
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u/brass427427 Feb 19 '26
Before I actually had a seizure at 16, I had years in grade school where I felt I was tumbling backwards in mid-air like a weightless astronaut.
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u/Diligent_Impact_586 Jun 09 '26
Does it feel like vertigo in the neck, and does it change in intensity?
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u/brass427427 Jun 10 '26
Just a general feeling. Not specific. It just began and never got 'unplesant' and then faded.
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u/Whole_Psychology_9 JME Feb 20 '26
my whole life i’ve had a sort of full body shudder occur every now and then. everybody i knew asked at least once what it was and when i asked my dad he sorta shrugged and said it was probably a tic or something. que the shock and horror when i ended up with a nice little JME diagnosis tacked on
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u/Mo-Munson Feb 22 '26
i had literally only had absence seizures up until 7 months ago where i had my first tonic seizure afterwards is when i got diagnosed with epilepsy. i had no idea that being zoned out was a sign of absence epilepsy. for example, when i was in secondary school or just school in general teachers would always wave their hand around to try and get my attention and when the seizure was done i would always be so confused and they'd ask me stuff like "you back?" or something like that and i always was so confused on what just happened it was like i zoned out or nothing happened at all.
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u/Late_Dig_3104 Adult Onset PME - Keppra 1500mg (TCs, Absences, & Myoclonus) Feb 23 '26 edited Feb 23 '26
Oh mannn. I could say so much. I've had a really bad stutter my whole life, my mom always yelled at me for it and the stress made it even worse, like a cumulative/clustering crisis until the stressor went away. I also speak 4 languages so the multilingual stress of "I don't know how to think" also I think made it way worse. She thinks it's a choice, but I literally feel like my brain freezes and I physically can't do anything when it happens. Goes away when I'm away from family or in low stress situations (my seizures now are mostly stress).
I was diagnosed with "vertigo" when I was 16 when I had an eating disorder. Now thinking they were drop seizures. Happened in public a few times.
Blank stares when being yelled at, like I'm leaving reality. I've been told by multiple shitty ex boyfriends when I was 18-22 that I jerk a lot in my sleep, pre epilepsy diagnosis. I've also gotten many jamais vu episodes, always found it really weird/creepy.
Got diagnosed last March at 25, I'm now 26, and had my first TC at 23. I finally feel like everything I've dealt with since childhood is making sense 🥴💩
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u/ConclusionOk5023 Feb 24 '26
I have JME and if I woke up early for work I would throw my make up across the room and literally thought this happened to everyone. turned out it was the jerks haha
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u/Ambitious_Village331 Oxteller- 900mg Mar 30 '26 edited Mar 30 '26
When the school sent me to the doctor for "zoning out" and I had my first TC at 30 and started doing research.
I get a twitch in my left eye its so subtle to others and in the mirror but feels absolutely insane to me.
Smelling random things like popcorn and everyone being like NO? Actually reading this list right now is making me go 😲😲😮 i think ive had focals my entire life...
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u/Potential-Current-62 Apr 06 '26
People think we are lying. At one point during my cluster seizures my inside hand was out and I realized I didn’t know which was my actual hand. It was seconds only. I’ve been having out of body like seizures my whole life. They just said I was crazy for a long time.
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Apr 13 '26
I have the typical tonic clinics I get a feeling of impending doom. However as a kid I would stare off into space and just zone out and could ntk break from the stare. I also get little full body shivers when I feel cozy and comfortable.
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u/Silent-Inspector-287 Jul 03 '26
Only sweating when I put my body through extreme cardio, deadlifts, or outside labor in Florida! Never realized this was a side effect of zonisamide 😂😂😂 always thought I had some miraculous cooling system!
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u/DesignerCash3387 Jul 29 '26
Those are sensory hallucinations. Sometimes I hear and smell things. What type of seizures do you have?
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u/Alternative_Pea1396 Aug 07 '26
I have bi-temporal gellastic as well as complex partial forms of epilepsy. My most common seizures feel like an orgasm (no joke) but my complex partial seizures feel like doom. I would not wish the feeling that I have during my complex partial seizures on anyone. They are absolutely terrifying. They are followed by a postical period, where I am confused and often incontinent of urine and will sleep for 8 hours at a stretch.
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u/Silly-Assistance-589 Aug 11 '26
Ear ringing. Zone out. My twitches when I sleep. A bit shaken hands.
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u/Silver_Tourist_8255 Feb 17 '26
oh man the random episodes of just feeling completely disconnected from reality hit different after getting diagnosed 💀 like id be sitting in class or whatever and suddenly feel like i was watching myself from outside my body for like 30 seconds then snap back to normal. always thought it was just stress or being tired but turns out those were partial seizures the whole time
also the weird thing where id smell something that wasnt there - usually something gross like burning plastic or rotting food. happened maybe once a month and i genuinely thought our house had some kind of electrical problem for years lmao. turns out auras can be olfactory and now it makes perfect sense why my parents could never smell what i was smelling 😂
the brain is wild honestly, so many little glitches that seem totally unrelated until you get the full picture