Any phrase, idea that helped you navigate life with epilepsy?

Good Morning to All!
Has anyone in your life ever shared something with you that stayed with you — a phrase, an idea, a way of seeing things — that helped you navigate life with epilepsy?
It doesn't have to be profound or polished. Sometimes the simplest words land the deepest.
I'd love for this to become a little collection of wisdom we've gathered along the way — from all the people and places that have helped us keep going. Feel free to share as much or as little as you'd like.
Chris

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Chris Gautier, Volunteer Mentor @santosha

Congratulations @frankv on nearly a year seizure-free — that's wonderful news! Thank you for sharing those reflections — "take your meds" and "stay off alcohol" are such simple but powerful lessons.
Was there anything else, such as a way of seeing things, that's stayed with you and helped you through your epilepsy journey? I'd love to add it to the collection of wisdom we're gathering here, if something comes to mind.
Thank you!
Chris

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@santosha one other reflection: gratitude. I just turned 81 last month. considering my legacy of fatal heart disease on my father‘s side of my family , I never expected to live nearly this long. I’m so greatful for this unexpected longevity that the seizures are just one more bump in the road.

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Thanks wish I could stay awake

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Profile picture for Chris Gautier, Volunteer Mentor @santosha

So well put, @louissc ! Fear does serve a purpose — the problem arises when it becomes chronic and paralyzes us.
Last year, during the second semester, my complex partial seizures came back — sometimes once or even twice a week. With them came a familiar fear: what if I had a seizure alone on the street? That fear pushed me to think of ways to feel more secure, without stepping back from my life.
First, whenever I walked to Pilates or Tennis, I'd let my husband know when I left home and send him a quick message once I arrived. I also mentally mapped safe stops along my routes — shops, restaurants, supermarkets — where I could rest, breathe, and show my medical bracelet if needed. Once that strategy proved it worked, my fear eased and I gradually extended it to other activities — meeting friends, going to appointments on my own, and more.
As @marianne72 so aptly put it, 'Life is risky no matter what or where!' Living in a large, bustling city like São Paulo has taught me that managing risk is simply part of daily life — and that the same mindset applies to living well with epilepsy.
Has anyone else in our group faced this kind of fear? What strategies have helped you stay engaged with life rather than withdrawing from it?
Chris

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@santosha

I’m glad you know when to let fear served its purpose without letting it take over your life! We will all leave the world one day, it’s just a matter of when. I just want mine to be fast, quick and painless. And let it be a celebration of life lived instead of a life gone.

I simply chose to take life easy and Kerry had taught me to sometimes take my hands off the wheel a little and trust others they can manage even when I’m not around. That’s what made one a lot less stressed, and made me smell the flowers more.

Admittedly though, many a time it’s not me who’s doing the worrying. For e.g I dare to do what you’re doing currently. But family members are the ones worrying.

Cheers,
Louis

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Profile picture for larrywr @larrywr

Taking Keppra which makes me feel sleepy and more depressed. Is this unusual?

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@larrywr

Yes all AEMs can have depression as side effect thus that’s why your neurologist’s 1st question to you during every check up will be “how do you feel?”. It’s a sign to keep an eye on. Don’t overlook it, and to highlight it. It’s a must.

Cheers,
Louis

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Profile picture for frankv @frankv

I have been seizure free for nearly a year after I was hospitalized for four days. Two reflections: take your meds, and stay off alcohol.

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@frankv

Please stay off ALL forms of alcohol for all AEMs. I know it’s hard. I hadn’t touched even a drop of beer since the day I had been diagnosed with epilepsy.

Cheers,
Louis

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Louis, My neurologist is OK with one drink a week. So far so good.
Frank

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Profile picture for louissc @louissc

@frankv

Please stay off ALL forms of alcohol for all AEMs. I know it’s hard. I hadn’t touched even a drop of beer since the day I had been diagnosed with epilepsy.

Cheers,
Louis

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@louissc
@frankv
Good advice Louis. Not only because of potential increased AED side effects but because it's also a toxin and carcinogen and there is no safe level of alcohol consumption according to the World Health Organization.
Take care,
Jake

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Profile picture for frankv @frankv

Louis, My neurologist is OK with one drink a week. So far so good.
Frank

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@frankv

Hi Frank,

Haha maybe my neurologist is more strict.

Cheer,
Louis

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