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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 · 21/12/2024

Thanks MR with contrast next weekend, preop and meet surgeon 30Jan then sEEG on 6March.

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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

That’s very sweet of you but a bit too far for me 💜

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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 · 01/12/2024

Sorry you had to put up with that, I’ve blocked them and suggest everyone else does the same x

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

I feel sorry for you that your life has made you so bitter and twisted. If you don’t know what you are commenting on then please don’t. Try and learn to see the good in people, especially the angels like Oliver and his mum - it really isn’t hard.

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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 · 30/11/2024

Thanks, everything feels a bit surreal from cocktail of meds but no seizures overnight so that’s a bonus

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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

Frightened. Not sure how people will be safeguarded

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

You’ve probably already done, but try citizens advice and Epilepsy Action helpline

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

I’m vegetarian but appreciate the effort going in to create this image of a turkey with brain body in purple!

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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

I hadn’t got a clue before working with kids epilepsy services and still didn’t realise I was having seizures. You can’t see what’s going on inside someone’s brain. It was a steep learning curve for sure. Likewise I only recently realised I’m autistic and got diagnosed - then everything made sense!

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

PS I forgot to say ‘you too’ take care and sleep well 💜

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

I’d gone a couple of weeks and had a good run (since the awful TC cluster and ambulance), so can’t complain. Well only a bit!

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

Thanks, I’ve taken a clonazepam so hopefully that will guard against any further seizures overnight, fingers crossed 🤞

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

(UK) frustrating to feel discriminated against for a plasma pen cosmetic treatment. It was refused because I have epilepsy; their insurance companies believe there is a risk it can cause seizures. Personally feel discriminated against as there is nothing involved that would be a trigger for me.

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

My daughter gets a metallic taste in her mouth as an aura / focal seizure. Taste is definitely part of epilepsy for some people - if the brain controls it and that part of the brain is affected by seizures…

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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

Thanks, yes it’s a big surgical procedure and only done in rare cases when there isn’t enough information from normal video EEG (3-5 days) and scans to confirm the seizure location 💜

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

💜 each wire has electrodes along its length and they insert 10-20 wires in the operating theatre. They stay in situ for approx 2 weeks whilst you are also videoed 24/7. It allows them to accurately record seizures starting deep in the brain. It’s only done in a few cases before epilepsy surgery

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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

Eugenics: mercy killings and sterilisation of people with epilepsy and other disabilities. This seems a mindset that is just as frighteningly flawed.

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

Read how being autistic is similar to how being left handed was once not acceptable - why would we want to correct being autistic any more than being left handed? We just need to accept it is another way in which brains work. Not sure that made any sense sorry, just shocking and worrying.

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

Thanks for this. I have a daughter who is a 1st yr medicine student and with no doctors in the family it’s nice to hear.

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

There’s a really helpful epilepsy surgery group on FaceBook too, if you need somewhere to talk - it’s just people who have had surgery or are on surgical pathway 💜

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