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 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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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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Profile picture for Randy Shields
Randy Shields | @randallshields56 | Apr 29 12:06pm
In reply to @randallshields56 "another thing i have learned from the seizures both myself and daughter get is we both..." + (show)
Profile picture for Randy Shields @randallshields56

another thing i have learned from the seizures both myself and daughter get is we both have different triggers. hers are usually because of too much going on in the brain and getting overheated. hers didn't start till she had her two kids. mine was from a tumor and too many head traumas .with bringing family on board was tough, but every obstacle i improved on regardless if i considered it a win or not. it was to them. i knew i was being watched 24/7 but they learned with me that i would let them know the minuet i was not feeling right. mad a big difference after a while, only one condition, had to have my phone with me always. what set mine off was too much input to the brain at a time. made me think to hard, i taught them patience and it paid off for all of us. now i think of what i want to say before i say it, makes good practice for speaking to anyone.

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@randallshields56 Ps, just found out this month before it goes out the window that my temperature from the neck up plays a key role in my triggers for having seizure symptoms beginning. Twice now in different locations my daughter had to remove headgear and outer garments that held heat so i could cool down and both times she could see me coming around more quickly to normal. Ty

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3 replies
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Randy Shields | @randallshields56 | Apr 30 10:33am
In reply to @randallshields56 "@randallshields56 Ps, just found out this month before it goes out the window that my temperature..." + (show)
Profile picture for Randy Shields @randallshields56

@randallshields56 Ps, just found out this month before it goes out the window that my temperature from the neck up plays a key role in my triggers for having seizure symptoms beginning. Twice now in different locations my daughter had to remove headgear and outer garments that held heat so i could cool down and both times she could see me coming around more quickly to normal. Ty

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Thank you for the helpful. It works knowing, now just have to remember it.

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1 reply
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Randy Shields | @randallshields56 | Apr 30 10:34am
In reply to @randallshields56 "@randallshields56 Ps, just found out this month before it goes out the window that my temperature..." + (show)
Profile picture for Randy Shields @randallshields56

@randallshields56 Ps, just found out this month before it goes out the window that my temperature from the neck up plays a key role in my triggers for having seizure symptoms beginning. Twice now in different locations my daughter had to remove headgear and outer garments that held heat so i could cool down and both times she could see me coming around more quickly to normal. Ty

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Thank You.

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Profile picture for Randy Shields
Randy Shields | @randallshields56 | Apr 30 10:35am
In reply to @randallshields56 "@randallshields56 Ps, just found out this month before it goes out the window that my temperature..." + (show)
Profile picture for Randy Shields @randallshields56

@randallshields56 Ps, just found out this month before it goes out the window that my temperature from the neck up plays a key role in my triggers for having seizure symptoms beginning. Twice now in different locations my daughter had to remove headgear and outer garments that held heat so i could cool down and both times she could see me coming around more quickly to normal. Ty

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Thank you.

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louissc | @louissc | Apr 30 10:33pm

Friends who I haven't met in awhile will wonder for sure. When meeting with people who you haven't met with awhile and won't know what to expect, be the one to start that topic. Be the one who takes the initiative to get that topic out of the way, say no need to panic at all and when only to be concerned. They may be hesitative to ask you. Once that's out of the way, everyone can relax and all will enjoy yourselves. They won't go call ambulance or something if you have a seizure.

For our loved ones, no point telling them don't worry. They will worry, no matter. I will just do what they want to put them at ease. Want me to always have someone around me even in the bathroom? Sure. It will mean I will lose my privacy, but it comes with the condition. I can't go jog in the park because no one loves jogging? Sure. I will find other ways to exercise even though I love the park and there's a Starbucks there I used to just chill and be alone, grabbed a cup when I felt like it. I no longer have my alone time. But then, I must also remember my loved ones also have to deal with a "new" me, and put up with it too.

I am an atheist. I don't have a religion, but I do believe in fate. When it's my time, it's my time. The fact I am still here even after the doc told my family to be prepared? Well, maybe there's a reason? I don't know.

Let's see.

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Randy Shields | @randallshields56 | May 1 12:10pm
In reply to @randallshields56 "Thank you for the helpful. It works knowing, now just have to remember it." + (show)
Profile picture for Randy Shields @randallshields56

Thank you for the helpful. It works knowing, now just have to remember it.

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@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏

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4 replies
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Randy Shields | @randallshields56 | May 1 6:15pm
In reply to @randallshields56 "@randallshields56 ps, didn't see it coming back to back type of event, but had to help..." + (show)
Profile picture for Randy Shields @randallshields56

@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏

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Thank you have a wonderful evening and a blessed one.

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Randy Shields | @randallshields56 | May 2 8:04am
In reply to @randallshields56 "@randallshields56 ps, didn't see it coming back to back type of event, but had to help..." + (show)
Profile picture for Randy Shields @randallshields56

@randallshields56 ps, didn't see it coming back to back type of event, but had to help my daughter through one of her seizures. Was a long day and night around here. Have a blessed day today 🙏 everyone 🙏

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Thank you for the hug 🤗

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