What if others say they're afraid you'll have a seizure?

I’m coming at this from someone who lives with epilepsy and doesn’t have epilepsy. Knowledge is power in my opinion. The unknown is scary. That said, I will never get used to my son’s seizures. He had a sudden onset right before his last year of high school and had 18 tonic clonic seizures in about 5 mos time before the right combo of drugs got on board.
I won’t lie, it’s scary to watch a loved one fall to the ground and shake about and make scary noises. Thankfully he has been seizure free for 2 years and I’ve settled a bit but I still get a bit of a panic if I hear an odd noise.
I can’t imagine having to be the one who is actually living with this disease, but I love the info on the phone case, I bet you could get a case made with the note. My son wears a medic alert bracelet and, quite frankly, I’ve told him he doesn’t have to tell everyone he meets, if he doesn’t want to.

I’m sorry if people have lost friends over this, I can only imagine it was out of fear, but it still stinks!

Tracey

@santosha
Hi Chris, Below is the note I used to carry in my pocket. It's a full printed page; I would fold it into 1/4 and keep it in my pocket, along with ID and my Emergency Pill. I stopped carrying the note once I was seizure-free for 6 months. At that point I felt confident that the new medication was working well for me.

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Dear Friend:

Please call 911 and let them know that < Your Name Here> has had an Epileptic seizure. My ID is on me. Let 911 know of any injuries I may have sustained. If I am seizing or convulsing, please move objects away that could cause injury. Important - DO NOT put ANYTHING in my mouth - its a choking hazard. Please stay with me until paramedics arrive.

Also please also call my Emergency Contact: < Contact Name> at < Contact Phone Number>.

Thank you for your help!
< Your Name> , < Address optional>

The seizure itself may last 3-5 minutes:
• During the seizure I may be unconscious and not be able to hear you or respond to you.
• If standing, I may lose consciousness suddenly and fall. Note any injuries I may have.
• If possible, ease me onto the ground
• If possible gently roll me to one side (keeps my airway clear so I don’t choke)
• Cushion my head with something soft like a rolled up towel or a folded jacket.
• If I am wearing glasses please remove them if possible.
• Loosen anything around my neck like a tie that might constrict breathing
• I may foam or bleed from the mouth – this is part of the seizure – do NOT attempt to stop it.

Once the seizure is over, it may take a while to recover. I may be confused until then.
• In the recovery phase I start to “wake up”, regain awareness, and begin to hear and understand you.
• If I have Oxygen with me, encourage me to use it. It helps me recover faster and think more clearly.
• I usually carry a pill case with my "Emergency Med" < med name here>. Once I am alert enough to swallow it on my own, remind me to take it. It helps prevent another seizure.
• Please make sure I have spoken with my Emergency Contact and I have a plan to get home.

What is a seizure ?
A seizure is a sudden burst of electrical activity in the brain that interferes with the body’s ability to function. Depending on severity, a seizure could be as mild as a temporary lapse in memory or awareness, or as serious as a tonic-clonic (grand mal) seizure with loss of consciousness and convulsions. Any seizure that lasts more than 5 minutes, or stops and restarts could be fatal (status epilepticus)

@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

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

@santosha I've given this a lot of thought. Based on my career tasks (not medical), I've experienced legal implications (again, not medical) regarding provision of too much information. I'd like to share this topic with you in the next few days, so you might want to hold off more work on your draft. Okay?

@royanthony
Hi Roy!
I really appreciate you taking the time to look it over and jumping in to help make it more concise!
Last week, I wasn't feeling well and had to pause my activities. So I didn't get a chance to work on the card yet. I'll pick it back up this week and keep you updated.
Thanks again for your help!
Chris