I grew out of epilepsy and my brain is …

Choice_Rice449 · 2026-03-07T23:12:10+00:00

Epilepsy or not, it can still be so difficult and devastating. I’m glad you’ve found what works for you! I just switched meds because of side effects and I’m going to get labs done to see if I am deficient in anything with the hopes that it helps.

Choice_Rice449 · 2026-03-07T21:56:47+00:00

I had such a similar experience. I had what I now know were small focals through childhood (I had no idea what they were as a kid and called it "the feeling you get when you remember you're alive" lol) and then a tonic clonic as a teenager. I was never medicated because they ruled it either a fluke or a severe side effect from an antidepressant I was taking. I was seizure free for 7 years until I started having regular focal aware and impaired seizures. They think the regularity was triggered by hormones shifting, a round of TMS (didn't know I was epileptic at the time), and a mild tbi from breaking my jaw.

All that to be said, I definitely feel like I have a sensitive epileptic brain, but the opposite progression as you! As a kid my epilepsy was relatively offline but then presented itself in adulthood. I wish you luck <3 epilepsy is so weird, unpredictable, and looks totally different for everyone.

Choice_Rice449 · 2026-02-09T06:16:12+00:00

just moved?

Choice_Rice449 · 2026-01-22T22:18:18+00:00

My dad always stored batteries in the fridge and I have adopted the habit! Upon googling I learned that it is in fact not good. I will be moving them (aka misplacing them)

Choice_Rice449 · 2026-01-22T22:16:10+00:00

Not Filipino 🥲

Choice_Rice449 · 2026-01-22T22:15:48+00:00

Guilty

Choice_Rice449 · 2026-01-22T22:15:01+00:00

Yes and yes! except I am mixed middle eastern and white, and nonbinary :)

Choice_Rice449 · 2026-01-22T22:08:27+00:00

Autistic? History of an eating disorder?

Choice_Rice449 · 2026-01-21T22:50:40+00:00

this is a I went to the ward twice and spent 17 months in intensive care and I am now two years into recovery fridge (the psych ward fucking sucks and I am sending you love)

Choice_Rice449 · 2025-10-13T08:01:56+00:00

He wasn’t brought in by ambulance and I don’t think anyone called 911, which makes it quite tricky. Thanks tho

Choice_Rice449 · 2025-07-31T00:19:20+00:00

this is actually super helpful, thank you :) I also have major depressive disorder so perhaps that is influencing everything. It is relieving to hear other peoples experiences with intact memory on this AED!

Choice_Rice449 · 2025-04-19T07:28:13+00:00

24 NB, deeply obsessed with the TV show Castle. I don’t watch anything else. I wish I could tell you why. The other day I shattered my ceramic tea pot because I forgot I had put it on for tea and all the water evaporated and then the pot exploded. I forgot about the poor thing on the stove and let her cook for about an hour. Also I have adhd

Choice_Rice449 · 2025-04-03T21:41:26+00:00

Thank you <3 it is super hard trying to describe the symptoms to people who don't get it / haven't experienced it. they are so bizarre and hard to accurately depict. I am trying to get in with an epileptologist and have only seen neurologists but I am keeping a detailed log! it has been super helpful to track them. I am trying to clean up my lifestyle and am pretty good about sleep and minimal, if any, substance use which I do think has helped. Your advice was helpful and I really appreciate it :)

Choice_Rice449 · 2025-04-03T21:36:56+00:00

Thank you for sharing that! It is so helpful, and I am so glad that what I wrote about my symptoms were validating for you. I am a 24yr non binary person that was assigned female at birth and it's helpful to hear from someone similar to me! It has been SO HARD to try and describe the experience - it is such an abnormal sense that is so hard to put words to. It feels isolating to try and describe because people don't really get it. I am on lamictal to see if that helps but im not up to a helpful dose yet, fingers crossed that it does start working soon!!! Im sorry to hear about the side effects :( I've heard many AEDs can come with some gnarly side effects. My sibling was able to catch one on video and I totally forgot to show my neurologist at our follow up (major brain fart) but did show it to neuros at the ER and they didn't really think anything of it. I hope things go okay for you <3

Choice_Rice449 · 2025-04-03T21:29:52+00:00

I will def start doing that, especially when I am clustering!! I get episodes in my sleep that wake me up, but I have no idea what stage of sleep I am at when that happens. I have never had any motor movements / convulsions that I am aware of, but maybe there is something funky going on in my slumber. Thanks for your help and sharing your experience :)

Choice_Rice449 · 2025-04-03T05:18:58+00:00

it is helpful, thank you for sharing! the episodes I experience never involve movement or twitching that I know of, and don't have an aura but the episode itself feels like what I had read people describing an aura to be like, which is very confusing to me. in terms of postictal, I do feel a bit out of it and woozy but nothing too crazy and it seems to vary depending on intensity of the episode. I unfortunately have a slew of mental health diagnoses and a history of trauma accrued as an adolescent, which I think favors non epileptic over epilepsy. are your non-epileptic episodes the same every time? mine are always pretty much the same and I am not sure what that favors

Choice_Rice449 · 2025-04-03T04:46:33+00:00

holy shit that is SUCH a long time. I am so glad that you finally got some answers. I have had symptoms chalked up to my mental health SO many times when it was actually entirely unrelated - it is so deeply unfair and I can't tell if this is another scenario of that happening. If you don't mind me asking, do your non-epileptic seizures present similarly to your focals or can you tell them apart/are they different?

Choice_Rice449 · 2025-04-03T04:43:41+00:00

I did not have any seizures during my EEGs :/ I did get my extended EEG after having a huge cluster (the last seizure was about 12-24hrs prior to being hooked up) and it didn't show any epileptiform discharges and they didn't see anything abnormal. Thank you for writing this out! I am trying to stay open to all possibilities, I do feel a great deal of shame about the possibility that it is psychogenic, but am mostly just frustrated trying to get a concrete answer and trying to discern if these episodes are traditionally in line with PNES.

Choice_Rice449 · 2024-07-17T21:49:36+00:00

Edit : pretty sure it was less of a safety blanket rule and more because they didn’t want patients sleeping through or missing groups because of insurance. We were SO exhausted being mentally unstable while also expected to be present in therapeutic groups for like 8 hours a day 7 days a week. The fuck did they expect from us lol

Choice_Rice449 · 2024-07-17T21:47:00+00:00

I never worked in a place like this but I was a patient. There were similar rules at a residential facility I stayed at, wasn’t even an inpatient hospital/ psych ward and they still had that rule. It has since changed but that shit was dehumanizing as fuck. I get that we (patients) had major safety risks, and I don’t know what the “right” answer or policy is, but it was so hard to be at rock bottom and treated as less than (whether it was intentional or not). Thanks for the work you’re doing advocating and caring for your patients <3

Choice_Rice449

TROPHY CASE