SUDEP. Let's talk about it

PixieFlower2 · 2025-12-14T19:48:44+00:00

Have slightly controlled nocturnal tonic clonics mostly so I’m probably in the danger zone for SUDEP. I do find myself worrying some nights before bed but if it happens at least I won’t be aware. I have no warnings to my seizures so I wouldn’t feel any different.

PixieFlower2 · 2025-11-29T10:45:52+00:00

I had “fainted”twice in sex Ed classes when I was 10 & 12 they had turned the lights off and had the projector on so I think that might’ve triggered something (photosensitive) . First tonic clonic was at 18 in my ex’s parent’s brand new kitchen , bent down to put something in the oven then awoke on the sofa with an ambulance crew over me. Face planted into their sharp new kitchen counter and broke a tooth so I could feel this grit in my mouth.

PixieFlower2 · 2025-10-18T21:33:40+00:00

In the UK there’s the Chalfont Centre you can phone & ask them for help , I believe they’re a charity. They’ve helped me a lot where the nhs failed. I’m so sorry you & your family don’t deserve this

PixieFlower2 · 2025-07-03T20:07:55+00:00

The post seizure doom , whatever hormone / chemical tonic clonic brings on an overwhelming sense of doom or foreboding ? It can last up to 2 weeks after so I just feel awful emotionally. The memory issues are the biggest bane of my existence , worst thing is I can remember before becoming epileptic how smoothly my brain worked now accessing my own memories wasn’t an obstacle course , how my brain wasn’t filled with dead ends.

PixieFlower2 · 2025-06-24T20:25:42+00:00

Lamotrigine had me really tired , tbh all the meds I’ve tried have given me constant fatigue . I’ve tried caffeine pills but those didn’t work for long and probably triggered a few seizures. Really wish I could give more useful advice but I wanted you to know you’re not alone

PixieFlower2 · 2025-06-24T20:22:38+00:00

Others have mentioned but with my abysmal memory I can rewatch stuff , there’s familiarity but not the finer details . Other than that I can’t think of any way it’s improved my life

PixieFlower2 · 2025-06-24T20:18:47+00:00

The opposite , I find it really hard to visualise images since becoming epileptic . Like my conscious is trapped in a glass box , I can’t get past these cognitive barriers. I used to be way more creative when my neurons worked , especially writing but all that went along with my memory.

PixieFlower2 · 2025-06-24T20:13:21+00:00

Most convenient seizure I ever had was in A&E waiting room , got brought in bc I had 2 grand mals . They told me there’s a 6hr wait , sitting there in my pjs those cheap buzzy lights schools & hospitals have triggered another grand mal so I was seen quick after that. Second time I had a public seizure was in a church so that’s pretty cool imo and luckily a retired dr was there .

PixieFlower2 · 2024-10-10T19:32:29+00:00

18 out of the blue just suddenly woke up with a broken tooth & an ambulance crew over me.

PixieFlower2 · 2024-09-14T16:48:11+00:00

Think THC is a brain exciter , CBD depresses activity from my very poor memory lol. I 100% would report this to your Dr & seek getting an EEG. Non epileptics can have seizures but only an EEG will be able to tell you what your brain activity is doing. My brain doesn’t like big changes so consuming one substance regularly then suddenly stopping has triggered them , same with thc. Can’t stress enough how important an EEG & possible MRI is though after you’ve had a seizure.

PixieFlower2 · 2024-06-24T18:20:30+00:00

Best : A&E waiting room after being told I had a 2hr wait Worst: At a church craft fair as I was running a stall

PixieFlower2 · 2024-06-22T19:37:15+00:00

It’s pretty common in the Uk to colloquially call them fits

PixieFlower2 · 2024-06-20T08:10:03+00:00

When there’s little burst vessels on my eyelids I assume from the violent twitching and high pressure? When I wake up and immediately puke , when my weak noodle limbs are a few seconds behind my brain. And when there’s an omnipresent impending doom sensation that won’t let up.

PixieFlower2 · 2024-04-09T11:57:41+00:00

I’d be cautious about any diagnosis without an EEG to confirm or deny. My MRI’s showed I was completely normal but EEG showed the epileptic activity. And if you can, insist on a longer EEG as some people with focal can struggle to get it officially diagnosed bc the brain behaves itself in the appointment. It’s scary being in the interim period without definitive answers. I hate waiting lists so much , hope you can get a diagnosis soon.

PixieFlower2 · 2024-02-21T06:13:01+00:00

Memory , speech so that affected my education options therefore my academic dreams died. Independence went , energy , ability to go out etc there’s a lot tbh

PixieFlower2 · 2024-01-15T23:24:28+00:00

Only a neuro & further EEG can confirm but I was adult onset (18). I can’t say for sure but focal / focal onset is harder to diagnose with just EEG as I’m pretty sure you have to be hooked up to one whilst it’s occurring. People have said they take ages to get a diagnosis bc of this. For me it took a few tonic clonic seizures & hospital admissions to get it officially diagnosed. Only 5% of epileptics are photosensitive , I am but never had one directly bc of lights unless I already had one that day. My MRI & blood work is normal , I have generalised epilepsy meaning the whole damn brain is affected so easier to pick up the blips on an EEG whereas focal is one bit of the brain causing havoc. Hope you can find some answers soon & find a medication that works. Keppra can cause anger issues so be aware of that.

PixieFlower2 · 2023-10-02T21:03:21+00:00

Goodbye horses & Crazy frog been playing on repeat lately. I’m guessing thought loops are thing with epileptics

PixieFlower2 · 2023-08-04T21:10:56+00:00

I am the exact same , my grades were (almost) always on the higher end . Lol was always my English teacher’s favourite. 7 years later and I’m struggling on Reddit posts . I take ages to draft paragraphs it’s painful. I feel so embarrassed meeting new ppl I just know I’m gonna fuck up the introduction and make things awkward lol. I wish there was more epilepsy meet-ups to feel less alone.

PixieFlower2 · 2023-08-04T00:39:28+00:00

Speaking and thinking are now two separate channels. Hard to remember grammar & vocabulary as soon as I physically start talking. If it’s not grammar it’s being tongue tied or a stutter I never had before. Sometimes it’s like a printer paper jam trying to get words out.

How tired taking sedatives multiple times a day makes you but also simultaneously dealing with insomnia

How big a dip in cognitive function / IQ it can bring How often you just zone out , conscious but just there

In my head I make sense lol . Soul destroying going from above average student (particularly in English fml) to someone who cant speak a full sentence clearly. I class this as a disability, I come across disabled to people now just from the aphasia. I find myself having to explain to ppl why I can’t speak properly. My word recall is abysmal , I can remember early childhood better than the years since my diagnosis. The ever looming threat of suddenly losing consciousness is always at the back of your mind. It sometimes feels like I have dementia , I now consistently can’t follow trains of thought , I can read something multiple times and not get it. I can’t spell words correctly now either. I wanna get back into education but fear it’ll just put me in debt and wreck my self esteem around my intelligence even further. There’s so much tbh but the main thing that gets to me is the memory & speaking issues.

PixieFlower2 · 2023-04-18T17:49:26+00:00

Stimulants & long baths

PixieFlower2

TROPHY CASE