1. < Epilepsy & Seizures
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What if others say they're afraid you'll have a seizure?

Posted by Dan Noyes @dannoyes, Jan 13 12:30pm

A friend recently came to town and he wanted to get together for lunch. On the way to the restaurant, he looked at me with trepidation and asked, "What do I do if you have a seizure?" Many of us are so used to epilepsy we don't even think twice about what it must be like for our family and friends to be with us. During the holidays, I once again saw some of my family giving me some distance, especially while I had a mini-absence seizure at Costco (not convulsive, but...well, you know). I'd love to know how you have handled this, especially getting together with people you haven't seen in ages.

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

Profile picture for Randy Shields
Randy Shields | @randallshields56 | May 26 8:17pm
In reply to @randallshields56 "@laura1961, Laura if they happen around a certain time, it's quite possible you can figure out..." + (show)
Profile picture for Randy Shields @randallshields56

@laura1961, Laura if they happen around a certain time, it's quite possible you can figure out before hand by a couple days and reduce your stress knowing that you have plans in place for reducing symptoms like box breathing. I recently started using it because of the added stress of late and it has helped me with fucus and relaxing my over active mind. Hope this helps. Have a blessed evening

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Thank you.

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marianne72 | @marianne72 | May 31 9:25pm

Thanks to this group for all of your honest comments and free exchange of info, ideas, compassion, and encouragement. You've helped me a bunch since the sudden onset of seizures for me last September. You help me have appropriate perspective in celebrating six-months seizure free this weekend. That means I can legally drive in my state, even though I'm overseas at the present time. Medications have helped build my confidence and reassure my family that I'm more stable. Life is risky no matter what or where! Hugs and encouragement to all! 🙂

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1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Jun 1 7:17am
In reply to @marianne72 "Thanks to this group for all of your honest comments and free exchange of info, ideas,..." + (show)
Profile picture for marianne72 @marianne72

Thanks to this group for all of your honest comments and free exchange of info, ideas, compassion, and encouragement. You've helped me a bunch since the sudden onset of seizures for me last September. You help me have appropriate perspective in celebrating six-months seizure free this weekend. That means I can legally drive in my state, even though I'm overseas at the present time. Medications have helped build my confidence and reassure my family that I'm more stable. Life is risky no matter what or where! Hugs and encouragement to all! 🙂

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Good Morning @marianne72
What wonderful news — six months seizure-free is a real milestone and very much worth celebrating! 🎉 It's so moving to read how far you've come since September, and how much your confidence and stability have grown along the way.
It also warms my heart to know that this community has been of some help in your epilepsy journey. 💜
I loved your last line: "Life is risky no matter what or where". What a nice way of seeing life and our challenges. This will surely stay with me and be incorporated in my little booklet of wise words.
Thank you for sharing this milestone with us! Wishing you many more seizure-free months ahead — and keep that positive spirit you've been sharing with us, it has surely played a part in reaching this milestone.
"Que pase lindo" ("have a lovely time") as I recently learned on my trip to Uruguay. 😊
Chris
P.S. Marianne, it would be wonderful if you could share these words of wisdom here as well:https://connect.mayoclinic.org/comment/1588025/

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marianne72 | @marianne72 | Jun 1 8:10am

Good morning, Chris! Thanks for your shout-out and encouragement to repost my comment on the other thread page, which I’ve done.

Honestly, I had edited out some sidebars and settled on the important part of acknowledging the grace of sharing the good in this community.

As I was writing, I flashed on the scary testimonies, the real fears, the strident comebacks to discrimination, how clearly people communicated the legit difficulties of just living. The truth is > Support groups work! Thanks, everyone!

Enjoy the day ahead as you can! 💝

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Randy Shields | @randallshields56 | Jun 1 1:54pm
In reply to @randallshields56 "@laura1961, thank you for the posts, I am glad you keep in touch with her, many..." + (show)
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@laura1961, thank you for the posts, I am glad you keep in touch with her, many give up and never call or visit. Thank you for reaching out to help with your mom. Wish things were better for you.

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Thank you for the like

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Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Jun 23 1:51pm
In reply to @santosha "Hi Everyone, A quick update: the first aid card is still on my to-do list and..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

Hi Everyone,
A quick update: the first aid card is still on my to-do list and very much a priority — just moving a little slowly on my end!
In the meantime, I came across this article that I thought many of you might find useful. It covers key reasons why wearing a medical epilepsy ID bracelet can make a real difference — especially in situations when we may not be able to speak for ourselves.
3 Reasons To Wear an Epilepsy Medical ID Bracelet - My Epilepsy Team
https://www.myepilepsyteam.com/resources/should-you-have-an-epilepsy-bracelet
Chris

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Hi Everybody,
After my trip to Uruguay and my experiences over there, I decided to make a badge instead of a first aid card, using the hidden disability badge that was given to me at Montevideo's airport. My badge was ready yesterday! 😃
Translating the content of this badge to English:
"Hi, I'm Christine.
WHAT IS HAPPENING?
I am having a mild epileptic seizure that will pass on its own, without any intervention needed. I may appear confused or unable to speak, but this is temporary. There is no danger — I just need someone by my side.
HOW YOU CAN HELP ME:
Please call:
Marcio: +55 11 99426-6665 or
Omar / Marcia: +55 11 3876-2136 / +55 11 94212-1936
Let them know where I am so they can come and get me
Stay with me until one of my contacts arrives
THIS RARELY TURNS INTO A CONVULSION, BUT IF IT DOES:
Turn me onto my side, support my head with something soft (my bag or jacket) and let the seizure run its course.
DO NOT restrain my body movements
DO NOT put anything in my mouth
DO NOT call emergency services unless the convulsion lasts MORE than 5 minutes
QR Code on the back.
Thank you for being here with me!"
I am attaching a picture of the badge for you all — maybe it gives you some ideas!
I used it for the first time yesterday when going to my yoga practice and felt so good, as it is much more visible than my medical ID bracelet. In the coming weeks, I will be sharing more experiences with you.
Chris
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