For those without epilepsy

[Chris515]

Thank you to all the people who take care of us, and to those who take care of their loved ones.

It is interesting how our carers can sense when we're going to have one. They just know after seeing it so many times.. and yeah it must be awful to see. I've only ever seen one tc in person and it brought me to tears..

Love is the word, no doubt. my wife must love me if she's taking care of me unconditionally like this. Soothing me when I'm freaking out in the postictal.. it's got to be tough to see.

 

[Chris515]

Yes Qtown,i think they notice subtle changes in our behaviour that perhaps we don't.My brother sometimes notices hours before the event.He's been there when i've seized at a funeral,middle off the road,the list goes on and i do think the world off him for it.We have a laugh about it after,i tell him i get more bruises from him wrestling me when im coming out off it than the actual seizure.But i dread to think off some off the situations i'd be in if he wasn't there.

I feel the same.. i've been in some tough situations and thank God my wife was there. I had a lot of tc's when I was single and on my own, but thankfully nothing terrible ever happened.

 

[Fedup]

qtowngirl

You have a way with words and I agree with you 100% but there are those of us like yourself who have more on your plate.

well i guess all of us are pretty damn awesome then - sufferers and the ones that help. i believe without E none of us (hate E or not) would be 1/10th of how strong we are today. i firmly believe that about myself, making me even more scared of the surgery b/c what if it's successful? i won't know who this girl is after 20 years of fighting. you guys fight hard too, like i said we're all AWESOME.

No surgery will change who you are or what you are, a great person. 20 years is a long fight no harm in a break (most only go 13 rounds) remember you keep fighting as well.

 

[qtowngirl]

I have friends ask me why i'm not charging him rent. How do you charge rent to some one who puts his finger in your mouth to give you a pill while i'm chewing on my tounge and his finger.
Lets face it that is love.

HI FIVE Pita, hi five.
if i was in your situation i wouldn't charge a dime either, what he goes through would be payback enough. love all around, give your son big hugs from cwe!!!
:woot:

 

[qtowngirl]

ThankI've only ever seen one tc in person and it brought me to tears.

sorry to hear chris, must have been horrifying. i haven't seen one in person and when i think about it it's too surreal. really can't believe i've had a group of people around me, loved ones and strangers, watching me do that. *shudder*

 

[JustAnotherName]

Yeah, I can't imagine witnessing a tonic-clonic (or any type of seizure, really). My first ever tonic-clonic was at work with about 5 or 6 people around. I can't imagine how scary that must have been. My co-worker was absolutely terrified. The poor kid's voice was shaking when he was explaining what happened a couple of days later.

My boyfriend hasn't seen anything beyond a simple partial, but I remember texting him after I woke up in the ER. It really freaked him out but he has handled everything really well, considering. We are long distance but he was so wonderful about it all and has been really understanding.

He's been in a couple of "crisis situations" with me in the past, so I have no doubt he'll be a great support if I have any other inexpected seizure episodes in the future. He's been a champ thus far, and my family has been, too.

I'm lucky that my seizures are pretty controlled. I liken my epilepsy to getting the flu once ever year or two. When it happens, it's bad, but it doesn't happen often.

 

[valeriedl]

my bf too - knows its coming.

My husband usually knows when I'm going to have one also. It might even be hours before it happens. He says my face and lips will turn pale. He'll ask me if I'm ok when he notices that and I will be but sure enough later I will have that seizure.

I guess it's because he's seen so many he just knows what goes on before it comes on.

 

[valeriedl]

Right from our very first date my husband knew I had epilepsy. My parents told him what to do if I had one.

The first seizure that I did have with him was a partial that I blacked out during. He called my parents and my dad said to wait about 5 minutes and if I didn't start to come out of it to call them back.

I didn't so he called them back and they said that they'd come get me and take me to the ER. Well at the time I didn't have any clothes on, let's just say I was changing them.... He knew he had to get me dressed before my parents got there and I fought him like crazy while he was doing it. He did manage to get clothes on me before my parents got there.

When they were all in the waiting room at the ER my mom started crying and said to him that now he saw what I was like he was going to leave me for sure. He told her "Why would I do that, she's great!" and gave her a big hug.

 

[Crash]

I think that perhaps witnessing a tonic or any type off seizure for that matter when your an epileptic isn't as bad as you would imagine,just due to the fact you have told people many times what to do,and,also you have been told what others have told you what they have done for you.

Maybe you are sanatised to it,so your acting in a state off remote control for want off better wording.Everything that needs done,is all ready stored in your brain and you just spring into action.Also you have the compassion as you know what that person is going through,so helping them is your first instinct.

 

[qtowngirl]

well i hope if that happens to me as it did to you with that fellow that i will be as tough and react as quickly as you did

 

[Chaz1]

thats 3rd time now I put my back out (can only sit right now), by jumping out of bed too quick to 'get there'.....moving too fast (straight out of sleep) at the sound of the T/C hollar/scream..

gotta strengten this ole back of mine and let my 2 feet hit the ground before I dash off to 'be

 

[pita300]

owwwwwwww Hope every things is ok. Because you are one of the Hero's we are talking about on this thread!!

 

[Chaz1]

thank u pita

oh yes, going to get the ole back better prepared once recovered exaclty what I will be doing

much prefer to be waving magic wand and banishing E 4ever......

 

[pita300]

You a good person and a pillar of strengh. I'm sending good thoughts your way and will say a prayer for you also.

 

[Chaz1]

That’s very kind of you pita.

You put a warm smile on my face and light in my heart....now that’s just downright marvelous...Thank u much...

 

[valeriedl]

thats 3rd time now I put my back out (can only sit right now), by jumping out of bed too quick to 'get there'.....moving too fast (straight out of sleep) at the sound of the T/C hollar/scream..

gotta strengten this ole back of mine and let my 2 feet hit the ground before I dash off to 'be

Have you ever gone to a chiropractor? I had sever back pain for years from a herniated disc. I finally decided to have screws put in because nothing was working for me. Out of all the things that I tried the chiropractor did work the best.

Hope it gets feeling better.

 

[KarenB]

When my son has a seizure, I just feel this crushing helplessness -- and anger -- Epilepsy is the enemy, and a seizure is a battle that has been lost (but it doesn't mean the war is over).

So...in Mommy mode -- making sure he's safe and comfortable, comforting him, and tiptoeing around so he can sleep it off.

Once it's all over, and he's settled into his post-seizure nap, I stay in the room with him for awhile, and curl up with my computer and seizure log to try and figure out what went wrong and how to win the next battle. It might mean tweaking the Ketogenic diet, adjusting a med, adding in a supplement, removing some seizure trigger, but with God's help, this war is going to be won.

 

[Chaz1]

thanks valeriedl,

No, but plan is to see chiropractor in coming weeks, hope I found me a good one....

 

[arnie]

I know that my wife is always a little bit on edge. I only have partials (well, almost only. I had a tonic clonic last april), but even the partials scare her. (I have anywhere from about 15-30 or so per month.) If she even thinks I might be having a partial it gives her a little scare, and when I took a nap the other day (which is kind of unusual for me) she was worried that something had happened to me. This is not a woman who is super nervous and hysterical either. It must be difficult for our spouses and families. In many ways it is worse for them than for us, I think.