Fin Barnes

I have epilepsy. Seizure procedure: put something soft under their head, time the seizure, call emergency if it goes over 4 minutes, DON’T put anything mouth.

[Fin Barnes @FinBarnes]

One year seizure free today! Keppra lost effectiveness late 2021, tried many others then settled in on Vimpat with a touch of Fycompa thrown in. Hopefully everything settled now. @BrainAblaze #epilepsy

[Fin Barnes @FinBarnes]

@Xx17965797N Video taken from the October 30th 2020 Covid riot. https://t.co/o4XUvNBqvu

[Fin Barnes @FinBarnes]

@Dee000000000 @BrainAblaze I use it if I ever start feeling a bit strange. Makes me feel more confident that I won’t have a seizure. Not sure how much is psychological and how much is the drug. But hey, the good thing about placebos is they work. So it’s a win either way.

[Fin Barnes @FinBarnes]

@Trev972 @BrainAblaze A month into Briviact I noticed I hadn’t really moved from the sofa for a week. Not even to shower. Figured it was not the drug for me.

[Fin Barnes @FinBarnes]

@UrsulaRooth @Happydog___ Absolutely, dogs definitely don’t improve the wellbeing of patients …. Oh, actually, hold my beer while We all read some science: https://t.co/QHOSz5Mt7h

[Fin Barnes @FinBarnes]

@Trev972 I maxed out on keppra so moved to briviact and soon stopped leaving the house/sofa/bedroom. Definitely a level of depression I didn’t have with Keppra. Now on Vimpat, seems ok so far.

[Fin Barnes @FinBarnes]

@Trev972 @kaileyh175 @BrainAblaze Keppra stopped working for me October 2021 after 6 years-ish. Stepped up to keppra cos that’s the progression, but it made me really depressed. No tinnitus though. Now on vimpat and fycompa. 6 months free tomorrow.

[Fin Barnes @FinBarnes]

@Trev972 @kaileyh175 I use an app and and week long pill box. 6 month seizure free tomorrow and, as a result, cutting back on the meds (on neurologist suggestion). Confident I’ll make the year!!!

[Fin Barnes @FinBarnes]

@BrainAblaze I had a seizure last year whilst drinking coffee so gave it up immediately. Now switched drugs and “need” coffee to get a past the side effects. Haven’t had am attack since restarting. 🤞🏻

[Fin Barnes @FinBarnes]

@BrainAblaze Calling it a fit or a seizure, I’m fine with. Whatever. As long as the people around me know to do I.e: when I fall to the floor and shake in front of you. I will bite my tongue, Don’t put anything in my mouth, try to cushion my head. Call ER if it goes past 4 minutes. Etc.

[Fin Barnes @FinBarnes]

@BeyondHamilton @BrainAblaze My work colleagues asked for a poster in the office kitchen to tell them what to do if I do have a seizure in the office. Haven’t ever yet, but they recognize it might happen. Love them for that.

[Fin Barnes @FinBarnes]

@BrainAblaze It doesn’t need a symbol. Just talk to people. Tell everyone you meet “this may happened and if it does, do this.” I’ve never known anyone to not be fully supportive. Nobody should ever be embarrassed.

[Fin Barnes @FinBarnes]

@Imvaxedryou @BrainAblaze Don’t whatever you do go on Citalopram to combat the side effects. Nasty horrible drug.

[Fin Barnes @FinBarnes]

@Imvaxedryou @BrainAblaze I’m on fycompa, at night. As well as Vimpat and a tiny bit of keppra morning and night. A little tired in the mornings but 6 months free in a few weeks. Whoop!

[Fin Barnes @FinBarnes]

@BrainAblaze Oh and I tell everyone meet that I have epilepsy. Fuck stigma, everyone needs to know it’s a thing and everyone needs to know what to do.

[Fin Barnes @FinBarnes]

@BrainAblaze Giving up driving, no problem. UK free London travel for us lot is amazing, Spain doesn’t do anything like it though. However I only recently realized I have to give up cycling too. That sucks.

[Fin Barnes @FinBarnes]

@BrainAblaze Given the other comments this feels too simplistic, but you’ll always have to be sitting down when holding your child.

[Fin Barnes @FinBarnes]

@BergBronwyn @BookyMorticia I’ve woken up on the floor at 7am with broken glasses but everything else in perfect order (tidier than usual). It’s a strange disease.

[Fin Barnes @FinBarnes]

@kaileyh175 @Chaser671 I’m on a vimpat/fycompa mix. Morning’s are a struggle but finally feel solid again after 6 months of seizure activity.

[Fin Barnes @FinBarnes]

@dalpeaches2008 I say f*ck it, you might get a smack to the face as you go down but what better way to tell people about it. Go out and teach people. Tell them what might happen and what to do if it does.