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.

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Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 1 day ago

Hi Everyone,
I've just finished the first draft of a card I'm creating to carry with me when I'm out alone and starting to have a focal seizure. I'd love your thoughts on whether it's clear, reassuring, and easy to follow.
Here's what I have so far:
______________________________________________________________________________________________________________
Hello, I'm Chris
What's happening:
I'm having a simple focal seizure (non-convulsive), which lasts a few minutes. I can't speak right now, but I'll return to normal soon. There's no danger, I just need someone by my side.
How you can help me:
- Call: Marc 11-99161xx or My Building's Front Desk 11-5052 xx and tell them where I am so they can come get me.
- Stay with me until I recover or someone arrives.
I rarely have convulsions, but if it happens:
- Turn me on my side, support my head with something soft, and let the seizure run its course
- DO NOT restrain my body movements
- DO NOT put anything in my mouth
On my left arm, I'm wearing a bracelet with all my information.
From my heart, thank you so much for being here with me in this moment!
__________________________________________________________________________________________________________
I'm planning to print this on business-card size to keep it in my pocket and also attach it to the back of my mobile.
Thank you so much💜!
Chris

REPLY
Profile picture for Chris Gautier, Volunteer Mentor
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Chris Gautier, Volunteer Mentor | @santosha | 3 days ago
In reply to @earlylonghauler "Hi @santosha, I was an adult when this started for me, and in the beginning having..." + (show)
Profile picture for earlylonghauler @earlylonghauler

Hi @santosha,
I was an adult when this started for me, and in the beginning having a note was important for me and others. It was a quick cheat sheet. When I was with family or friends I let them know I had the note and Emergency med in my pocket. Over time, everyone knew, and I felt less of a need to carry the note. Also I tended to have sleep seizures so less need for a note in my pocket. Briviact working well is also a big factor in not carrying a note. If I were to travel alone I would probably wear a bracelet and possibly carry a note. I still have it ready to print and take it with me if needed.

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@earlylonghauler
Good Morning!
Thank you so much for sharing this with us!
I'm so glad Briviact has been working well for you. How long have you been taking it?
Would you mind sharing what you wrote on that card?
Chris

REPLY
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Chris Gautier, Volunteer Mentor | @santosha | 3 days ago
In reply to @marianne72 "@santosha thank you, Chris. Lots of good information you’ve shared here. I’m curious—sounds like you returned..." + (show)
Profile picture for marianne72 @marianne72

@santosha thank you, Chris. Lots of good information you’ve shared here. I’m curious—sounds like you returned to swimming but not to driving. Can you please share why/why not?

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@marianne72
Good Morning Marianne!
My pleasure!
You're right - I'm not driving. My doctor has advised me to stay seizure-free for two years before I can drive again, which I haven't achieved yet.
I did return to swimming for a while, always with someone by my side. In the second half of 2025, my focal seizures came back and I decided it was best to stop swimming for a while. But I've still enjoyed some time at the beach this summer and waded into the sea up to my hips. It felt so good!
Chris

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Randy Shields | @randallshields56 | 4 days ago
In reply to @randallshields56 "Hello everyone, I liked the idea of having a card you can hand out with instructions..." + (show)
Profile picture for Randy Shields @randallshields56

Hello everyone,
I liked the idea of having a card you can hand out with instructions on what to do and what type of seizures you are prone to having. that was a great idea. personally i am not in the position to be out somewhere without having a family member there to know what to do. this is new ground for me and i love to hear of ideas presented to help others. even made me remember from my past a couple ways to help and that has improved so that i am learning here new information i can pass along. Thank you everyone for your inputs.

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thanh you

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earlylonghauler | @earlylonghauler | 4 days ago
In reply to @santosha "@earlylonghauler That's great! Can you tell us more about how helpful that was early in your..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@earlylonghauler
That's great! Can you tell us more about how helpful that was early in your epilepsy journey?
I noticed you mentioned you no longer carry it—I'm curious what changed?
Chris

Jump to this post

Hi @santosha,
I was an adult when this started for me, and in the beginning having a note was important for me and others. It was a quick cheat sheet. When I was with family or friends I let them know I had the note and Emergency med in my pocket. Over time, everyone knew, and I felt less of a need to carry the note. Also I tended to have sleep seizures so less need for a note in my pocket. Briviact working well is also a big factor in not carrying a note. If I were to travel alone I would probably wear a bracelet and possibly carry a note. I still have it ready to print and take it with me if needed.

REPLY
1 reply
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marianne72 | @marianne72 | 4 days ago
In reply to @santosha "@marianne72 Hi Marianne! Thank you for being so open and sharing more of your journey in..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@marianne72
Hi Marianne!
Thank you for being so open and sharing more of your journey in this discussion. It's really appreciated!
The beginning of an epilepsy treatment journey isn't always easy and often requires life adjustments. After my first tonic-clonic seizure, my doctor at the time also advised me not to swim or go in the ocean—something I love. Like you, I live in a country (Brazil) with beautiful beaches and warm water. But these restrictions were temporary, just until my seizures were better controlled.
I haven't driven since my epilepsy diagnosis in 2019. At first, I really missed it, but I've adapted. Thankfully, I live in a neighborhood with lots of amenities nearby, so I can do most things on foot. Uber has also been a lifesaver.
I'm so happy to hear that Mayo was very helpful in finding the correct diagnosis and that you've been feeling so much better since starting treatment. You sound very positive, which really makes a difference in our epilepsy journey. Keep that spirit!
Please don't hesitate to reach out with any questions.
Chris

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@santosha thank you, Chris. Lots of good information you’ve shared here. I’m curious—sounds like you returned to swimming but not to driving. Can you please share why/why not?

REPLY
1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 4 days ago
In reply to @earlylonghauler "Good question. When I was first diagnosed I carried a piece of paper in my pocket..." + (show)
Profile picture for earlylonghauler @earlylonghauler

Good question. When I was first diagnosed I carried a piece of paper in my pocket with instructions on what to do / not do. Essentially, if I have a seizure, let it run its course, move things away that I might hit or hurt myself with. Also (very important) do NOT put anything in my mouth (old myths die hard). After about 5 minutes, once I’m back and alert enough, make sure I take the “emergency pill” which is always in my pocket, to prevent another seizure. If I’ve hurt myself call 911. I no longer carry the note, but if I am spending time with someone and have not explained this yet, I give them the quick rundown. Most family and friends appreciate the info - and they do need to know what to do and what NOT to do. People still think they need to put something in your mouth to keep you from biting or swallowing your tongue. It’s impossible to swallow one’s tongue, and anything put in the mouth becomes a choking hazard. Wishing you well!

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@earlylonghauler
That's great! Can you tell us more about how helpful that was early in your epilepsy journey?
I noticed you mentioned you no longer carry it—I'm curious what changed?
Chris

REPLY
1 reply
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 4 days ago
In reply to @dannoyes "@santosha, I love the idea of having it on the back of the phone. Keep it..." + (show)
Profile picture for Dan Noyes @dannoyes

@santosha, I love the idea of having it on the back of the phone. Keep it simple and easy to read. I like the idea of the business card for people you see regularly, but not sure that is applicable as much today as it would have been in the past. I really appreciate your considered response because it does make us stop and consider how it must be for those around us. Like my wife knows how to usher me out of Costco with minimal disruption. While my seizure response dog is great for me, others may view his response a little more directly. This is a tough one. While I was able to offer an assurance to my friend, it does make me consider that in some respects epilepsy has plenty of "second victims."

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@dannoyes
Good Morning Dan!
Indeed, epilepsy has many second victims, you put it perfectly!
Putting this information on the back of my phone and/or on business-sized cards is high on my priority list for the start of this year.
What if we each prepare a draft and share it with each other? It could be helpful to compare approaches!
Looking forward to your thoughts.
Chris

REPLY
Profile picture for Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | 4 days ago
In reply to @methel "@santosha Thanks for going to the extra work to specifically help everyone find these videos." + (show)
Profile picture for methel @methel

@santosha

Thanks for going to the extra work to specifically help everyone find these videos.

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My pleasure, @methel !
Chris

REPLY
Profile picture for earlylonghauler
earlylonghauler | @earlylonghauler | 5 days ago

Good question. When I was first diagnosed I carried a piece of paper in my pocket with instructions on what to do / not do. Essentially, if I have a seizure, let it run its course, move things away that I might hit or hurt myself with. Also (very important) do NOT put anything in my mouth (old myths die hard). After about 5 minutes, once I’m back and alert enough, make sure I take the “emergency pill” which is always in my pocket, to prevent another seizure. If I’ve hurt myself call 911. I no longer carry the note, but if I am spending time with someone and have not explained this yet, I give them the quick rundown. Most family and friends appreciate the info - and they do need to know what to do and what NOT to do. People still think they need to put something in your mouth to keep you from biting or swallowing your tongue. It’s impossible to swallow one’s tongue, and anything put in the mouth becomes a choking hazard. Wishing you well!

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