Testament to your strength

[Hunter]

*I put the title as "Testament" Its not really a testament, admiration is a better word, cant edit the title though.*
Everyday I feel more and more respect for those of you afflicted with epilepsy.

So my wife had another seizure tonight, I got the routine down good by now, nothing broken, no bitten off tongue, no bumps on the head. No problem, just another day. sounds casual but damn its some serious stuff.

From the other point of view(pov from the person not having a seizure) It really looks like you're dying or something super serious that absolutely has to be life threatening.

3 hours later, (It didn't last the whole 3 hours just like a minute or two) wife is fine. No headache this time, no body ache. She did bite the hell out of her tongue but thats the worst of it. She isn't acting like its nothing you know, but its borderline blowing it off.

I guess its no good if you stress over it.

I mean, you gotta wonder. You guys and gals gotta be strong.
How stressed do you all get over this stuff? How can some of you blow these thing off like this? I guess if you've had them often it makes sense.
But its still a scary thing.

Massive respect to all of you.
Best wishes as well
Hunter

 

[Formyson2]

As the mom of a teenager who just started having seizure-like episodes, I agree with you. It is frightening to be the observer. I feel helpless. I would like to be able to do something more to help....like stop them permanently!
I respect all of these people, too. Not only do they handle their own issues, they help others trying to figure this out.
THANKS to all!


~Nancy~

 

[skyfire322]

When I was a kid, my older sister had E so I grew up as an outsider looking in. It was pretty traumatizing. It was super stressful, as she had at least four or five grand mals with petit mals in between per day.

When I was diagnosed 12 years ago, I wasn't "desensitized" (if that makes any sense) once I heard the doctor say those words, but I cried. No one wants to hear a bad diagnosis of any sort!

My biggest fear in life is the unknown. Not knowing when I'll have a seizure is really darn scary. But my mantra is this.... Has epilepsy brought me down? Yes. Has it held me back? Sometimes. Has it completely stopped me from doing what I love? Heck no. As odd as this sounds, I have embraced it with open arms. It's a part of who I am, and I will never let it hold me back.

I wrote this a few months back, and I think this is a good thread to share it on. http://skyfire322.blogspot.com/2014/05/epilepsy-silent-storm.html

 

[arnie]

In my case my seizures have always been more scary for the people around me than for me. When I had the handful of tonic clonics that I've had over the years I was not "there" to be scared, and when I came out of them I was more confused than anything. Fear never was a part of it. The thousands of partial seizures I have had over the years have never really scared me. More of a transient removal from normal reality with a slight alteration of consciousness. It was always much more scary for my wife.

 

[Belinda5000]

my older sister once told me it was hard on her watching me have seizures.
I don't see how it was she always rushed to tell her friends my little sister has epilepsy all three of my sisters did that to me.

I don't see how hard it was on them? they knew what things could bring them on and still do and still bring on my seizures.:agree:

I was dx'd with have? I don't have auras my sz's just happened for any reason it doesn't matter I take my meds religiously.

 

[Hunter]

my older sister once told me it was hard on her watching me have seizures.
I don't see how it was she always rushed to tell her friends my little sister has epilepsy all three of my sisters did that to me.

I don't see how hard it was on them? they knew what things could bring them on and still do and still bring on my seizures.:agree:

It's not hard watching someone have the seizure. I mean, really all you have to do is look. Its hard knowing that all you can do for your loved one is try to make sure they don't bash their skull in or choke themselves with their tongue.

They just wanted someone to talk to about it i think. I know I needed someone to talk to about it. That's why I'm here.

 

[Dolores]

When I had seizures they were the full blown grand mal style - I was down for the count and staying down. The one thing I remember is that, as I was coming out of it and the fog in my brain was clearing ever so slowly, my first thought was always "Damn, I've had another seizure!". Then I was wiped out for the rest of the day. I do remember one time when some EMTs where there. All I wanted to do was walk and clear my head. I overheard an EMT say that I was on drugs! I wish my head was clear because I would have shouted at him "Yeah, Dilantin! You encounter a lot of people getting high on Dilantin?". Then I would have gotten his name.

I do know it was much harder for the people around me, especially my parents. I've never seen an epileptic seizure but they had and it was their daughter and there was nothing they could do to stop it. I know my mom felt it was her fault so when I think of all that she & my dad let me do, I find them quite amazing and am glad they were my parents. I do miss them so. They were the strong people in my life.

 

[valeriedl]

I've never seen anyone have a seizure so I can't even imagine what it's like for someone else to see me have one.

When I first met my husband about 10 years ago I'd only had epilepsy for a year. My seizures were quite often. I usually only have partials, very but they were strong and lasted a long time.

The first seizure that I had in front of him, a partial, was about 3 weeks after we started dating. My family told him what to do when I had one and he thought he'd be ok with it. But when I had that one with him it scared the crap out of him. He called my parents and they could tell how scared he was and they really couldn't talk him through it. They came to his place and we went to the ER because he didn't think he could get me there himself.

Through the years he told me that he's just learned that he needs to make sure I'm ok during it and wait it out. Many of them still scare the crap out of him though. When he tells me some of the things that I do during them we get a good laugh out of it however.

The only thing that really worries him now is that I'm going to have one that I'm not going to come out of. He said his biggest fear is I'll have one and when I come out of it I won't remember who he is. This happened after my very first seizure. I didn't remember a thing about the guy that I'd been dating for about 2 years, didn't even know his name who he was.