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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 Chris Gautier, Volunteer Mentor
Mentor
Chris Gautier, Volunteer Mentor | @santosha | Feb 17 3:50pm

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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Profile picture for royanthony
royanthony | @royanthony | Feb 17 5:52pm
In reply to @tchandos "I’m coming at this from someone who lives with epilepsy and doesn’t have epilepsy. Knowledge is..." + (show)
Profile picture for tchandos @tchandos

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

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@tchandos
Congratulations to your son and you! I've never spoken the Bible, but going from 18 TC's in 5 months to now seizure free for 2 years IMO is divine intervention. Where did you find such a neurologist or was that individual a formal epileptologist?

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