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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 17/01/2025

Darn it. It’s now less than 7 weeks til sEEG #epilepsy surgery and the only thing I could try and control was my weight. My #autistic brain decided ages ago I needed to be definitely below 12stone and I’m stuck at 12st6lb. (I was 14st so I know I’ve done great but below 11st is healthy for me).

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 26/12/2024

If you can support this, it will mean more than you can imagine. Doing this for myself and my daughter with epilepsy. www.justgiving.com/fundraising/...

justgiving.com

I'm Walking 50 Miles in February to fundraise for Epilepsy Action.

Help nicola Adamson raise money to support Epilepsy Action

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 21/12/2024

End of year weightloss summary for #epilepsy #sEEG surgery: 💜 on 6Mar25 Seizures: - focal impaired 4-5/week - Bilateral tonic clonic: 3/year Weight lost 25lb (11kg) BMI: was 32.6 now 28.5 Half way there - another 20lb (9kg) to lose next year to be a healthy bmi

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 15/12/2024

Had a bit of a break from here and the ‘other place’ and it did me good. By way of update I’ve seen neurologist and sticking with cenobamate (no meds working) until sEEG 6th March. Will be having updated MRI scan with contrast and CT scan, before Mar, as part of surgical planning.

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 05/12/2024

Stepping away from social media for a bit - just finding everything too political and negative, at least that’s my perception at the moment

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 01/12/2024

Family events aren’t easy with #epilepsy and #autism, but when you find out you simply weren’t invited to a close family birthday party other siblings were - that hurts. A lot.

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 30/11/2024

As it’s the start of advent tomorrow, what family traditions do you have at Christmas? Ours is a papier mache homemade snowman, that gets filled with sweets by 🎅 . She’s looking a bit worn and batterred but wouldn’t be the same without her!

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 29/11/2024

Just feeling sorry for myself today. Tired, focal #seizures, still feel pre-ictal and latest meds not worked for me (had to stop and go back to cenobamate for now). Took a clonazepam in hope of seizure free sleep tonight #EpilepsyAwareness

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 29/11/2024

Add in #autism (not uncommon alongside #epilepsy) and it’s pretty stressful, no matter how much you want to spend time with those you love 💜

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 29/11/2024

Weekly weigh in for #epilepsy #sEEG surgery: 💜 6Mar25 Seizures in last week: 2 Weight lost this week: 1lb (0.5kg) Weight loss so far: 9kg (18.5lb) Current BMI: 29 Lessons learnt: weight is stubbornly sticking!! (Pretty sunrise from my kitchen window this am)

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 28/11/2024

Not feeling right today- preictal weird feeling. Ignored this on Tuesday and had a horrible focal whilst walking dogs. So today they are going to hate me but going to listen to myself and stay home. Sorry dogs 🥹 #EpilepsyAwareness

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 26/11/2024

So after being refused a beauty treatment on grounds of having #epilepsy and suggesting that is direct disability discrimination in a FaceBook community chat, I’ve just had a barrage of people arguing with me. So sad that our condition remains so misunderstood 😢. I didn’t need that stress today 😢

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Reposted by Epilepsywarrior (she/her)

Brain Ablaze @brainablaze.bsky.social · 26/11/2024

We have heard people say they don't know anyone else who has Epilepsy. You're invited to meet more at our virtual support group this afternoon. Anyone with #Epilepsy (or their carers) is invited. #EpilepsyAwarenessMonth brainablaze.com/epilepsy-sup...

brainablaze.com

PST Epilepsy Support Group Session - Brain Ablaze

If you are looking for support, we have it. Our PST Support Group Session meets every month on the 26th at 6 PM PST | 9 PM EST. We hope to see you there!

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 26/11/2024

Darn it - was just thinking how I’ve had a lovely #epilepsy seizure free stretch, only to start with a cluster of focal impaired #seizures today. The ones where I look fine but inside my brain gets scared and confused; hate these ones. Very tired but scared to sleep as on my own 💜

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 26/11/2024

#EpilepsyAwareness what’s the worst part for you? I hate the scary confusion of focal #seizures and after a focal to bilateral tonic-clonic (#FTBTC), for me, there’s a minimum 24hrs of severe headache, vomiting and sleeping to follow.

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Reposted by Epilepsywarrior (she/her)

Greg Grunberg @greggrunberg.bsky.social · 26/11/2024

TalkAboutItOnVideo.com

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 25/11/2024

Got a new date for my stereo EEG (invasive telemetry). The surgery will be on 6th March and then 1-3 weeks monitoring seizures. Feel relieved that I’ll finally get some answers 💜💜

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 22/11/2024

Did our first family cruise this year. Everyone loved it (incl 2dd #AuDhD) and I really wanted to, but few quiet places to escape too and the stress of waking up somewhere different each day (sometimes unexpected due to weather) was stressful & overwhelming #autistic. Anyone #autistic got advise?

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 22/11/2024

Pretty sky, especially as this is looking South (so a reflection of the rising sunlight). Simply taken on phone through my kitchen window

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 22/11/2024

Weekly weigh in for #epilepsy #sEEG surgery: 💜postponed Seizures in last week: 1 ☺️ Weight lost this week: +1lb 🤔 Weight loss so far: 9kg BMI: 29 Lessons learnt: the scales don’t always reflect the effort! (sEEG is a form of EEG involving surgically inserted wires, happy to answer Qs)

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 20/11/2024

Hating having #epilepsy. I’m so tired that I’m making a mess of trying to help my daughter with basic math homework. My brain just won’t remember how to do simple things.

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 19/11/2024

How do I get posts to show up in different feeds??? I’m using the # but not seeing them there

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 19/11/2024

#birds huge favour can people add what country their amazing bird photos are taken in? Will help me learn

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 19/11/2024

Not wanting to tempt fate but for the first time since the night of #FTBTC clusters, I did my ‘good day’ walk with the dogs. Then spent time chilling and watching garden. A happy #seizure free day 💜 #birds (for anyone new to #epilepsy #FTBTC are focal seizures that spread to bilateral tonic-clonic)

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 18/11/2024

Anyone with #epilepsy or passionate about raising #EpilepsyAwareness please follow me. New here and hoping to have the great community of support as elsewhere without the politics and adverts

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 18/11/2024

#birds fortunate to have lots of birds to our garden this year (N Eng). Clear I’m not a photographer (!) but had woodpecker, nuthatch, blue tit, great tit, robins etc as regular visitors. Tips to keep squirrels off the feeder welcomed!

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 18/11/2024

🌱 first frosts in England have meant popping the more delicate plants in the potting shed. Shed is new so very much learning as I go this year! (Picture was taken on a summer day before it was filled with seedlings and gardening tools)

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 18/11/2024

Horrible phone call - I was asked a question about something in the past, assuming I have a memory like anyone else! #EpilepsyAwareness

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Epilepsywarrior (she/her) @nicepilepsywarrior.bsky.social · 18/11/2024

Morning everyone. I’m still figuring out how to find all you #epilepsy warriors on here. Wishing you all a #seizure free day 💜

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