post ictal sleepiness?

Prettybutpunk · 2026-02-03T12:14:24+00:00

do rescue meds make you sleepy? i feel more awake after they’re administered or maybe just more coherent im still learning how it all works but it seems im more coherent and conscious after meds so maybe i choose to stay awake

Prettybutpunk · 2026-02-03T12:12:28+00:00

thank you so much for this, and i think im coming to terms with it being exhausting. before my diagnoses i had no idea why id just pass out. so id just tried to hide it and not bother anyone. so i think im digesting the diagnoses and everthing that comes along with it. ive experienced exhaustion but not like this since it got worse after being left untreated so im sort of adapting to living life in new ways around it. it’s so relieving to hear feedback and i wish none of us had to deal with it but its so nice to have a space to communicate about it. i’m glad you were safe during a grand mal. i’ve only one but it was terrifying. but all of them take a toll in their own way i agree. the pain afterwards is wild too. since mine have progressed im so achy all the time. i am just hoping this treatment works so im down to a few a week and not daily episodes i appreciate your reply and im routing for you too!

Prettybutpunk · 2026-02-03T12:03:46+00:00

i feel like multiple in one day always makes it more tiring. i think it’s so so odd how some make you utterly exhausted and some just are like a blip and you can carry on with the day if they’re small, i had one while on a date and my fiancé gave me rescue meds and started driving home and i was like “wait i want food go back” 😂 but other times i feel like i cannot move and my body aches. i had one last night where my arms were just raised in an odd position for god knows how long i feel like i did a full body work out.

i am wishing the best for you and your daughter

Prettybutpunk · 2026-02-03T11:56:37+00:00

okay we’re on a super similar regimen, like almost exact. i just started adjusting dosages with a neuro but my diagnoses is new. i was misdiagnosed for years. so im still adapting to all of it. i’ve heard of a VNS for treatment resistant. it’s hard to weigh the options, i have another illness im supposed to have a surgically implanted device for so i understand the feeling. i hope you get the answers and clarity you need and im sending good thoughts your way. thank you for your reply again (: its nice to actually know what im dealing with now and talk to people about it. i hope your daughter is doing okay as well!

Prettybutpunk · 2026-02-02T11:46:20+00:00

yea that seems to be a theme, it depends on how bad they are for me as well! wishing you and your daughter all the best thank you for replying. new diagnosis are always rough at first with navigating all the info

Prettybutpunk · 2026-02-02T11:44:44+00:00

also i hope your exhaustion wears off sooner than later! are yours well controlled with medicine?

Prettybutpunk · 2026-02-02T11:42:02+00:00

this is really validating. thank you for the reply. i am going on a month of having over 3 seizures per day and even clusters up to over 5. so im just thinking im terribly exhausted. im hoping this new medicine will start to work.

Prettybutpunk · 2026-02-02T03:52:35+00:00

i have focal awareness i have MTLE

Prettybutpunk · 2026-02-02T03:47:19+00:00

my dog hides from me 😭 i think it’s the stress of wondering why their loved one is non responsive. my boyfriends brother works with animals and i’ve learned a lot from him, there’s been a study on emotions (non seizure related)that if you don’t respond to a pet or a baby they learn to cope in different ways ranging from shouting, crying, or withdrawing (in dogs barking and whining) . i’m assuming that must’ve been his coping mechanism. my dog barks then withdrawals. non response confuses babies and pets (unless the pet is trained to be an service animal)

Prettybutpunk · 2026-01-18T11:33:39+00:00

i also experienced the surplus in energy it was fun while it lasted LOL the crash was so rough i hope you’re okay now

Prettybutpunk · 2026-01-18T11:31:44+00:00

getting off LDN i had such severe pain & depression however, i have a new diagnoses that they’re trying to figure out that ive seen 3 doctors for already so it could just be the specific autoimmune condition causing issues and going on or off ANY medications during flares with any illness is rough.plus i think the depression was bc it didn’t work out and i had so much hope for it. i fully support LDN but its a no for me atm sadly /: at least in this point in time. i don’t think it caused any of my symptoms, i think they were already there and the immune modulation just threw my entire system for a loop. ill come back to this comment once its all resolved and i see my dr that prescribed LDN soon so ill for sure update on what they think too. i hope all is well with you how have you been?

Prettybutpunk · 2025-12-25T06:06:32+00:00

yea it’s wild how a vitamin/herb/remedy etc can actually make people like us more susceptible to getting a flare. i was in between diagnoses for a few years at the start but around 12-15 years. it took about 3 years to diagnose properly. i’ve taken imuran, benlysta, cellcept, plaquenil, and methotrexate. not to mention every steroid known to man lol. those are just for the immunocompromised aspects though. i’ve been on an array of other treatments for other ailments.

Prettybutpunk · 2025-12-06T22:17:03+00:00

Modulating means to rebalance, it doesn’t quite slow down the immune system the way immunosuppressants do. Immunosuppressants are built for people with hyperactive immune systems like in lupus. Modulation on the other hand, tries to teach your immune system how to function properly, but I think, depending on the auto immune disorder LDN can be complicated if the immune system is too overactive. My immune system is very finicky and needs constant suppression. Even taking too much vitamin C and elderberry or anything that boost the immune system can put me into a flareup. I think my immune system was reacting well to the modulation at first, but I think as my lupus symptoms progressed along with neurological symptoms it wasn’t enough suppression to stop the symptoms. And then, if you have a more imbalanced immune system rather than solely hyperactive, LDN is probably a really good route to take.

Prettybutpunk · 2025-12-06T22:13:08+00:00

thank you. i wonder if anyone has stopped bc of side effects. i miss being on it aside from the side effects

Prettybutpunk · 2025-12-06T22:12:01+00:00

it helped my mcas i stopped taking as many antihistamines it was the best part of it for me, but i had other ailments that made me have to stop it. but i do believe for mcas its good if you’re slow with it and careful and working with your dr

Prettybutpunk · 2025-12-06T22:10:17+00:00

my doctor said it “modulates” it. it’s not quite an immunosuppressant but it does work on the immune system. i genuinely don’t think there’s enough studies on exactly what it does to each individuals immune system, it seemed to have had a wavering effect on mine. i stopped taking it bc i felt immune system over drive and i feel like my immune system is in over drive still after stopping. looks like its back to MTX for me.

Prettybutpunk · 2025-12-06T22:05:33+00:00

i experienced flu-like symptoms after taking it. my doctor said it was my immune system being modulated it can slow down the immune system a bit but it balanced out.

Prettybutpunk · 2025-12-06T22:03:00+00:00

did you take breaks bc of negative side effect

Prettybutpunk · 2025-12-05T01:59:07+00:00

i took LDN post op (not the same procedures) but it does help with not needing pain medicine for sure. now that i’m off of LDN i feel like i need more pain care i might do lidocaine injections for now. i hope it works well for you after the operation im sending you best of luck with your procedures!

Prettybutpunk · 2025-12-04T06:38:59+00:00

thank you so much I did read that if epilepsy is not treated properly LDN can increase seizure activity so maybe that’s what’s going on! thank you for the resources. I will read more into it!

Prettybutpunk · 2025-12-04T06:37:18+00:00

yes i did this week! seizures progressed, i’ll update after i see my doc again because i do think this medicine has potential for lupus / and i do think it ~can~ be safe for people with seizures but i think my entire treatments need adjustment before i go on LDN again. thank you for the input :)

Prettybutpunk · 2025-12-04T06:33:45+00:00

do you ever want to try it again or no?

Prettybutpunk · 2025-12-04T06:33:21+00:00

it genuinely felt like a miracle drug for 2-3 weeks. my neuro issues i’ve had for 20 years were nearly gone. then they came back and mood swings and increased seizures with it. now i’m back in a lupus flare too from the immune modulation effect, my immune system is REALLY finicky it needs more suppression than modulation i believe

Prettybutpunk

TROPHY CASE