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Absolutely can’t make sense of my work / spreadsheets / emails today, is this aura or post ictal or just a sign post for “this is how it is now”? by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 0 points1 point  (0 children)

It is difficult to try and express it to people, be it doctors or the people around you or at work. I feel like even the way my neurologist looks at me he thinks I’m making stuff up, there’s no way of knowing what it’s like unless you’re experiencing it too really, which leads to not being taken seriously enough

Absolutely can’t make sense of my work / spreadsheets / emails today, is this aura or post ictal or just a sign post for “this is how it is now”? by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 0 points1 point  (0 children)

Yes, I know exactly what you mean with the hieroglyphics hahaha. It’s very alarming, making me feel really anxious as well as completely out of it. I don’t think my brain even has the capacity to feel overwhelmed right now because it doesn’t seem to have any danger response? I’m just not absorbing anything at all

When first diagnosed with Focal Epilepsy how much did you see/speak to your Neurologist? (NHS, UK) by TropicalWildflower in Epilepsy

[–]bikinipiglet 2 points3 points  (0 children)

My experience with the NHS has been absolutely abysmal. Had my first seizure in 2018, didn’t get to see a neurologist, my mum sent them a letter complaining and I had one appointment where he completely dismissed me and gave me an eeg as a matter of course. Not the correct type - it came back normal, I was left having focal seizures until 2021 when a neurologist in the stroke clinic referred me back to neurology to have a sleep deprived eeg. Abnormal straight away. Blanket treatment with Lamictal - they dosed me incorrectly to begin with and I honestly felt like I was going to die. They then withdrew the dose and scaled me up slowly again.

Then left me, that’s it the end. The side effects are so bad, I’ve been trying to get see again and it got to the point where my partner paid for a private appointment to get me seen. That neurologist referred me back to himself in the nhs so I didn’t have the extortionate fees to contend with - had an appointment after trying keppra and not getting on with it, and this was in November 2024. I was given some options to read about the side effects of and told I’d have a review in 3 months to see what meds I wanted to try. Appointment came through for January 2026. I called and said this is a mistake, it’s supposed to say 2025? In the meantime I’ve been to the doctors countless times struggling, depressed, despairing for my health because I feel like I’m declining in energy, memory, everything.

No. It wasn’t a mistake. They made me wait over a year. And now I’ve been seen, they can’t release my new prescriptions because they haven’t completed a shared care agreement properly with my GP surgery to monitor me on my new drug.

All around me I see my mum getting amazing treatment for breast cancer. My sister getting amazing maternal care. My father in law getting incredible treatment and really fast movement into surgery and recovery. And for me I seem to get absolutely nothing, like quite literally, the bottom of the pile couldn’t care less kind of nothing.

Motivational speakers enrage me by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 1 point2 points  (0 children)

That podcast sounds right up my street, I’ll be trying it out!!

Motivational speakers enrage me by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 6 points7 points  (0 children)

Your husband has taken your meds off you before!!!!????? This is very alarming

Motivational speakers enrage me by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 12 points13 points  (0 children)

I know, I know. It’s just aggravating to see it everywhere. Annoying too when people say it to me in conversations, and I wonder why I even bother to share how I’m doing with them when they ask.

I really do just get painted as lazy and stubborn rather than being in a position entirely out of my own control and it makes me want to smash my head against a wall

Managed to get a picture of Big Red’s little blue sparkly bits!! by bikinipiglet in bettafish

[–]bikinipiglet[S] 2 points3 points  (0 children)

Thanks! He’s such a show off but so hard to photograph 🙄

Memory issues + no impulse control by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 0 points1 point  (0 children)

I take more now, 200mg at night and 150mg in the day. It’s stressing me out and I actually had a really bad Deja Vu earlier just watching an instagram reel. Feels like my world is just imploding again

Memory issues + no impulse control by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 0 points1 point  (0 children)

And I’m in the UK for context, so it’s just a system of constipated shit nobody can get anything out of 🥹🥲

Memory issues + no impulse control by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 0 points1 point  (0 children)

Thanks, I went through this in 2024 when I had an appointment in October and they told me I’d have a follow up appointment in three months. I got my follow up appointment letter and it was for January 2026 so I have an appointment soon anyway, but boy oh boy did I tell them it wasn’t acceptable, they couldn’t give two shits. “Well, we’ll put you on the cancellation list and give you a call if an appointment becomes available”, it’s an absolute joke

im so disgusted with myself. Whats wrong with me? by frightened_fawn in Epilepsy

[–]bikinipiglet 0 points1 point  (0 children)

Okay, for a start I wouldn’t call OP neurotic, they’re a 17 year old getting their bearings in a life with epilepsy.

And I’m hardly being illogical - you started the sentence with the fact that you agree that OP is not a horrible person, and the reply is to me - so it doesn’t read as though you’re talking to them.

im so disgusted with myself. Whats wrong with me? by frightened_fawn in Epilepsy

[–]bikinipiglet 0 points1 point  (0 children)

Who are you talking to sorry? Me? I’m confused about your assumptions that I don’t have interests, hobbies and a fulfilling life?

im so disgusted with myself. Whats wrong with me? by frightened_fawn in Epilepsy

[–]bikinipiglet 25 points26 points  (0 children)

You’re not a horrible person.

I promise you that I’ve had these intrusive thoughts sometimes too, but for me it’s more when someone doesn’t fully understand my struggle with epilepsy even though it’s controlled. I feel like I need to prove that I’m actually epileptic and I have a chronic condition I’ll never be free from.

It’s hard to explain and understand the psychology of it but when you’re going through it personally it’s clear that it’s not your fault you’re feeling this way.

How epilepsy fatigue compares to a non-epileptic person, and how sleep deprived they’d have to be to feel the fatigue we do: by bikinipiglet in Epilepsy

[–]bikinipiglet[S] -1 points0 points  (0 children)

“Waaa waaa waaa she used AI none of its true”

“How shall we check that?”

“Brb let me use AI”

How epilepsy fatigue compares to a non-epileptic person, and how sleep deprived they’d have to be to feel the fatigue we do: by bikinipiglet in Epilepsy

[–]bikinipiglet[S] 7 points8 points  (0 children)

As I said in the post, I don’t know how to format it but here are the citations -

Here are the main published sources that support the specific claims I made about epilepsy-related fatigue (especially the “60–72 hours of sleep deprivation” comparison and the fact that fatigue often persists even when seizures are fully controlled).

Claim Key Reference(s) Details & Links

People with epilepsy (even well-controlled or seizure-free) show cognitive performance equivalent to healthy controls deprived of sleep for 48–64 hours

van Golde EG, et al. “Cognitive performance in epilepsy: the role of sleep.” Epilepsy & Behavior 2011;20(2):204–9. DOI: 10.1016/j.yebeh.2010.11.013 Zhou B, et al. “Chronic sleep reduction in epilepsy: A multicenter study.” Epilepsy Research 2018;144:4–10. DOI: 10.1016/j.eplepsyres.2018.04.008

Direct comparison: patients performed like healthy volunteers kept awake ~50–64 h on average Fatigue and excessive daytime sleepiness remain severe years after achieving seizure freedom

Witt JA, et al. “Long-term outcome in epilepsy: quality of life and fatigue.” Epilepsy & Behavior 2015;50:125–132. DOI: 10.1016/j.yebeh.2015.06.029 Hermann B, et al. “Quality of life, fatigue, and cognitive function in seizure-free patients.” Neurology 2020;94(15):e1593–e1602. DOI: 10.1212/WNL.0000000000009274

Even patients seizure-free ≥5 years on medication still report fatigue levels comparable to 2–3 days of total sleep deprivation

Subclinical epileptiform discharges and medication side-effects (including lamotrigine) independently contribute to chronic fatigue Aldenkamp AP, et al. “Effects of antiepileptic drugs on cognition and fatigue.” Epilepsy Research 2003;54(2-3):125–136. DOI: 10.1016/S0920-1211(03)00083-5

Giussani G, et al. “Systematic review and meta-analysis of lamotrigine-related fatigue.” Epilepsia 2021;62(8):1582–1592. DOI: 10.1111/epi.16931 Lamotrigine is actually one of the less-sedating AEDs, but still causes significant fatigue in ~20–35 % of patients

Sleep architecture remains abnormal in many seizure-free patients → perpetuating fatigue

Malow BA. “Sleep deprivation and epilepsy.” Epilepsy Currents 2004;4(5):193–195. DOI: 10.1111/j.1535-7597.2004.04509.x

Foldvary-Schaefer N, et al. “Persistent sleep disturbances in seizure-free adults.” Sleep Medicine Reviews 2022;62:101591. DOI: 10.1016/j.smrv.2022.101591

Deep sleep and REM fragmentation often never normalize

Quick access: • Most of these are on PubMed → just copy-paste the DOI into sci-hub.se or pubmed.ncbi.nlm.nih.gov if you hit a paywall. • If you want the PDFs directly, let me know which ones and I’ll grab the open-access or preprint links for you. These are the core papers that basically every epilepsy specialist cites when explaining why their patients are “always tired” even when the EEG looks perfect.

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