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Epilepsy - tics

1 reply

ThatCurlyGirl · 08/08/2019 14:46

Still getting used to my epilepsy after a car crash which caused brain damage.

I have kind of tics now (neuro has called them myoclonic seizures), mainly when I'm speaking and my body jerks and I get the feeling in my tummy as if I'm about to fall down stairs / when you are walking and open a door and someone is unexpectedly there and you get a fright.

I work for myself and am slowly going back to work - for other people with similar problems, do you explain this at the beginning of a meeting or just after it happens? Or should I flag it before the meeting and reassure them if it happens not to worry?

My tonic clonics are generally under control thanks to meds but petit mal and similar fairly frequent and noticeable.

FWIW I'm still shit hot at my job and well known in my industry Smile

As a control freak who owns a business, it's already hard to go through seizures that are out of your control (particularly when I'm admitted to hospital and not aware until I come around postictal) not only tonic clonic seizures but also these day to day tics, so I'm feeling out of my depth when I have these in a work environment.

I work in consumer PR and I'm lucky I can be pretty casual (I wore dungarees and my flyknits today and clients don't blink an eye) but I'm aware that my tics may make people uncomfortable and want to manage this in a way that makes everyone feel ok.

Sorry if that's a bit rambly, any advice is welcome!

OP posts:
Mistlewoeandwhine · 09/08/2019 04:32

I would say to tell people at the start. So many people are ignorant about epilepsy that it is scary. Just calmly tell them that you might tic and why then get on with being awesome 🙂

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