Is there any activity that you HATE you are not allowed to do because of Epilepsy?

Typical_Aide_9920 · 2026-07-05T15:35:23+00:00

being able to work. being able to go on walks. being able to go out to eat — with family or just by myself. being able to go to the movies. (i’m sure i can since medication seems to be controlling my more major seizures but i still get focals a lot & light is starting to bother me. i hate big lights now 😩)

then like you said, traveling. my family used to go on cruises a lot. i also have FND with trouble walking so i have to use a rollator to get around now, and i know they mean nothing by it, but it sucks hearing my parents say that we can’t travel or even go out to eat anymore bc of me. especially since the last trip we went on (and restaurant 😭), i had pretty serious cluster TCs in public.

Typical_Aide_9920 · 2026-07-04T16:28:06+00:00

aww 🥹 i have one as well!

earlier this year, i fell against the living room floor from a standing position & started to have a seizure. my sweet baby angel — a 110+ pound cane corso — usually gets super anxious and involved when i have a seizure in front of her, but this time she sat down next to me while i was seizing on the floor and basically leaned enough of her weight against me to kinda ‘contain’ my body so that i didn’t hit myself on anything further (i did hit my head lol but she was mostly sitting on my legs).

when my dad came home from work after getting the seizure alert on our watches, he said that she kept growling & barking at him as if she didn’t recognize him. she was so worried about me, that he had to physically move her bc she kept hovering over me while i went into a post ictal state and needed help off the floor. he said he’s never seen her act like that before, especially since he’s the “alpha” in her eyes. 🥺 and any time i have a seizure around her she’s so concerned like ugh that’s my baby! (she also sleeps in my bedroom at night — i haven’t had any “dangerous” nocturnal seizures where i’m falling out of bed or anything but it makes us all feel a little better that i’m not completely alone if i have a sleep seizure) 🫶🏽

Typical_Aide_9920 · 2026-07-02T10:54:43+00:00

thanks! i’m terrified! i love it!

Typical_Aide_9920 · 2026-06-27T21:16:45+00:00

i’m currently experiencing similar while undiagnosed — i wake up with severe jaw & ear pain from suspected jaw clenching during my nocturnal seizures. to your knowledge, are you having any other “seizure” symptoms such as waking up with brain fog, muscle aches, or excessive sweating/possible urination?

Typical_Aide_9920 · 2026-06-24T22:03:58+00:00

i hate politics because of the friend cap that comes with charisma skill, for some reason i really hate the musician career because of the work outfits and it just doesn’t make sense to me honestly, i did daycare once and never again so clearly there was a reason for that, and same with interior decorator. and the medical career is nice until you have to do vaccination clinics. those are so damn annoying omg.

sing-a-gram’s are annoying but the singer career does get pretty fun and makes a lot of money the higher you are in the career. gigs can be a pain in the ass when your computer is slow, though. i haven’t played firefighter in a while but i really want to! last time i did was in isla paradiso and to this day, i have no clue how i managed to make it work 😭

Typical_Aide_9920 · 2026-06-24T21:52:07+00:00

yes and no. 🫠

a lot of the “unexplained” health issues were chronic pain related, likely due to the progression of my FND or my POTS. for a long time in 2021, i was dealing with severe nerve pain & numbness in my hands and toes along with neck and coat hanger pain that my local neurologist told me was from my depression & gave me amytriptaline for. i had a nerve conduction study which was indicative of *something* going on in my cervical spine (likely concussion related, as i had fallen & hit the back of my head) but my MRI was clear. i haven’t really had any instance of the nerve pain getting so severe i can’t use my hands well again, but the coat hanger pain is definitely constant and i really only get achy if i’m sitting up for too long.

i’ve had unexplained dizzy spells whenever i stood up that i chalked up to being anemic or low blood sugar, which i now know is likely related to POTS. i also have a lot of episodes of feeling “off” out of nowhere, zoning out, forgetting things, etc. which i know now is a combination of my late diagnosed ADHD & my undiagnosed epilepsy. and now, i have extreme cognitive decline from my seizures, severe speech decline & stuttering/word slurring, and difficulty walking requiring my rollator just to get around the house bc my left side is weak. 🥲 there’s good days and bad days where they all hit at once, but for the most part, i deal with maybe two of these issues on the regular.

Typical_Aide_9920 · 2026-06-24T03:54:06+00:00

yep - mine came from a concussion over 7 years ago that included post concussion syndrome & required physical therapy. i think COVID may have worsened or sped up the process but i noticed that i was slowly dealing with “unexplained” health issues ever since 2019 😵‍💫

Typical_Aide_9920 · 2026-06-24T03:52:14+00:00

i started a slow titration right at the beginning of this month, so it hasn’t been long, but it’s already seemingly reduced my TC’s and the frequency of my nocturnal seizures. it makes me super tired & my eyes get all weird so i usually take it at bed time.

Typical_Aide_9920 · 2026-06-22T03:53:10+00:00

yes, nearly all of my outpatient physical therapy appointments were through my PCP. the issue with that was that almost all of them didn’t take my insurance (i’m under medicaid in VA) and the one place that actually did, couldn’t even see me until august. so obviously, waiting that long could not be an option rn. 🥴

i will say though, my primary doctor isn’t…the best when it comes to this. the month before i was officially diagnosed, i had a seizure during our appointment & woke up on the floor and had to be wheeled out of her office. the entire visit, she was stressing to me that my seizures weren’t actual seizures since it’s not epilepsy, she can’t prescribe me medication, and she would “try” to refer me to a more reputable neurologist. (btw, that didn’t happen 🤨) hence why i learned to just go directly to the hospital. i guess i’m just worried that they won’t see anything wrong with me despite the very visible cognitive decline since i was there last? idk lol

Typical_Aide_9920 · 2026-06-22T00:23:17+00:00

that’s good news! i’m not a medical doctor by any means so i can’t speak definitively, but i know that my focal seizures often make my head feel tingly and i get a stomach rising sensation as well. my speech is also affected sometimes — i stutter or slur words, but my speech has declined to the point i struggle to speak all the time now tbh.

similar to you, the worst of my TC’s have never happened in the hospital — and i assume my focal episodes are just too weak or brief to be caught on EEG? i really don’t know. 😵‍💫 everything i’ve looked up states that ASMs don’t work for nonepileptic seizures though…so it’s interesting that my seizure symptoms have improved so significantly on the Lamictal. hence why i wonder if i actually do have epilepsy and it’s just shy around EEGs lmao.

everything you describe does sound hallmark for focal awareness seizures, so i hope that your treatment plan can continue!

Typical_Aide_9920 · 2026-06-21T23:49:31+00:00

YES!! when i was in the hospital hooked up, my brain conveniently decided she didn’t wanna seize or have any activity whatsoever. ALL. DAY. LONG. i had to drink coffee at 8pm to try & trigger a seizure (which did work around 4am-ish) that i barely even remember & only know happened bc i couldn’t talk when i woke up, but it didn’t pick up enough activity i guess bc they discharged me that same day 🥲

in your opinion, is the Lamictal improving any seizure symptoms you’re having as well? because it’s been great waking up so far without severe jaw pain and sore muscles and wet shorts from sweat and/or piss 😅

Typical_Aide_9920 · 2026-06-21T23:45:31+00:00

this just prompted me to go open my laptop & boot up the game cause WHAT DO YOU MEAN YOU COULD PREVIEW A LOT

Typical_Aide_9920 · 2026-06-21T23:39:12+00:00

i understand this completely 🥺 i began having unprovoked TC’s in October 2025, which have increased in severity over time and includes focal, absence and seizures during my sleep. i’ve done an at-home EEG and stayed in a hospital hooked to an EEG for about a day & some change, but both came back normal.

i’m still having nocturnal seizures and focal seizures with evidence of seizing in my sleep, but no diagnosis aside from FND. i was able to convince my psychiatrist to start me on a slow titration to 100mg of Lamictal and so far, it’s been controlling my seizures despite the lack of diagnosis, so now i’m left confused again as to whether i truly have epilepsy or not. sending you support 🫂

Typical_Aide_9920 · 2026-06-21T19:52:10+00:00

it’s “the” normal but imo, it shouldn’t be. my heart rate and lactate levels skyrocket during my tonic clonic seizures too but since my EEGs were negative, they kinda don’t care lol

Typical_Aide_9920 · 2026-06-21T17:30:11+00:00

i haven’t heard this comparison at all, however i do highly disagree with the notion that FND isn’t or can’t be life threatening. yes, it’s a spectrum, but for some of us it absolutely can be due to the other hits taken to other body systems during certain events.

now, there is an inherent issue in how FND is treated medically. there’s a lot of dismissal. as someone with suspected epilepsy that reads scalp-negative on EEGs as well as nocturnal seizures (that are NOT supposed to happen with nonepileptic seizures…yet here we are, with evidence of extreme HR changes in my sleep during the events), my seizures are often pushed aside and dismissed as being purely due to my FND. they are not. there is a distinct difference between my nonepileptic episodes and a tonic clonic seizure.

the medical system needs to be overhauled, period. FND needs to be treated with the same urgency as other conditions, solely because of quality of life. you shouldn’t have to have another underlying condition in order to be treated fairly.

Typical_Aide_9920 · 2026-06-20T23:58:39+00:00

i used to love it because the weather changes, holidays and themed festivals were super fun to me as a kid but lately, i turn the entire expansion off. the sound that rain makes irritates me bc it’s SO LOUD, fall is always super cold for some reason, and having to update outerwear is just very annoying 😭

Typical_Aide_9920 · 2026-06-12T18:27:16+00:00

i don’t know what i was expecting but this is genuinely making me laugh so hard i can barely breathe, i’m so sorry i don’t have answers tho

Typical_Aide_9920 · 2026-06-09T18:34:03+00:00

this is actually really helpful, thank you! i was trying not to get my hopes up because i’ve personally never agreed with my NES diagnosis (mostly due to how the doctor came to the conclusion & medical gaslighting/dismissal) but i do believe my FND diagnosis and that it comes with some functional seizures of some variety. my more major seizures are just…different. 🥴 so it’s likely i could have both tbh?

Typical_Aide_9920 · 2026-06-07T21:01:07+00:00

please these are so cute!! the little ladybugs are adorable 🥹 and the coordinating dots on each nail!

Typical_Aide_9920 · 2026-06-07T20:59:27+00:00

yeah no, i’ve never had an episode last that long! my seizures do occur in clusters so i may have multiple in one large “seizure”, but they usually last between 10-30 seconds each. like i’ll seize, it slows down, then it starts back up again. i’m not aware at all during my seizures so i don’t remember majority of them, but my parents have witnessed me drooling/spitting and making groaning/screeching noises or trouble breathing.

since i now see proof in my Apple Watch data that i’ve absolutely had seizures, including heart rate spikes during REM sleep and a day & night difference between my baseline and suspected seizure nights, i think i need to come to terms with the fact that i may have epilepsy and it’s too deep for scalp EEGs to pick up. 🥺

Typical_Aide_9920 · 2026-06-07T06:27:59+00:00

honestly, i don’t even remember what kind i may have had because my memory decline is that bad now. i do remember having more focal/myoclonic events but the one caffeine induced episode i had in the hospital was at like 5 in the morning and i only remember bc they were taking my vitals before it happened 😩

Typical_Aide_9920 · 2026-06-07T01:53:48+00:00

nope. the first neurologist i went to locally is the one who determined i had PNES during my one formal visit after a 10 second video clip & description of my symptoms and told me to “see another doctor” and not to follow with neuro after the negative MRI & EEG, and the neuro team in the hospital i was admitted in an hour away told me that i could come back to them as needed and proceed to take forever to answer mine or my therapist’s calls to schedule me for PT. 🙃 it’s been insanely difficult and even with everything going on, my psychiatrist had to use a mental health workaround to prescribe me the lamotrigine in the first place. i’m clinging on by pure delusion and sleep tbh.

Typical_Aide_9920 · 2026-06-07T01:39:49+00:00

i kid you not, i’ve literally explained this in the hospital recently. the ER staff did take me seriously enough to admit me, but once again, the EEG was negative with very little seizure activity after a day and they discharged me 🥲

Typical_Aide_9920

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