For those without epilepsy

[valeriedl]

This is a question for those of you without epilepsy.

How do you do it? I can't even imagine what it's like to look over and see us shaking, staring off into space and having no clue what's going on around us at all. That's got to be one of the scariest things in the world.

Half the time when my husband is asking me the questions that you ask when you come out of a seizure I have no clue what his name is. I know who the cats are but not him. I know he should be there but I just can't figure out who he is.

He's scared, and so am I, that one of these days when I come out of a seizure I'm not going to have any idea who he is at all. This happened with the guy that I was dating when I had my first seizure. It's been ten years since that seizure and I still don't remember anything at all about our relationship and who he is.

I just don't know how you can do it?

 

[qtowngirl]

This is a question for those of you without epilepsy. I just don't know how you can do it?

LOVE.
my bf and i have talked about this (i felt so bad for calling him by other people's names once), and here's his answer:

"first thing i do is check the time. i ignore my own anxiety and focus on what's happening. concentrate on surroundings, hold you up (three have been in the car), basically just make sure the seizure is the only thing to be worried about. FOCUS. and when you come out, things like not knowing my name don't bother me because it's the seizure doing it, not you. my emotion really lies in what just happened to you, what you keep going through. makes me so sad. and i know we'll go through it again, and again.
it would be more difficult to watch if it was more often (i have two or three a year). it's the partials that are getting harder. the lead up and the afterwards are harder than watching the actual seizure, lead up b/c i'm holding my breath watching to see if things are changing, and afterward b/c of watching you realize it just happened AGAIN. you're devastated."

 

[Chaz1]

The utter fear - this is one of the hardest things to deal with/come to terms with. So, once we let go of fear, it gets a bit easier....

we can’t be living in the wait so it’s for us real important to take let go of the fear to allow to live and let live…and take the goods times and darn well enjoy them....

so often we (the carers) can over think, is a seizure on horizon yet does not happen, then out of blue one appears...we just need to be ready to deal with the seizure itself and then provide love and support ALL the way.
And make sure our Son not only feels independent but is independent……E not going to rob him nor us of living our lives,
yes its darn well affecting memory, but good or bad memory, one still can live a rich and full life full of love, laughter, and yes good and bad times (which make us stronger)

after a seizure battering you mentally and physically, big time TLC and positive reinforcement is what’s needed... So for us, overall care mode is the easy part..because indeed, we LOVE

Plus, we search and try out every potential method to understand in the hope to minimize/control seizures.....this keeps hope strong……for all os us..

 

[JaneC]

I think the sort of overall concept of my daughter having epilepsy bothers me more than actual seizures. When they happen, you just focus on dealing with it and making sure she is ok. It's other times, when thoughts of things like SUDEP and head injuries pop into your head, that are scariest for me.

I try to think of seizures as just a medical thing like any other. For a number of hours after her first seizure ( I hadn't seen it and we weren't sure what was happening) my daughter's memory was shot and she was very confused.

That was scary because we didn't know what was going on. Later that day, I saw her have what I knew to be a TC. She was diagnosed the following day. Now seizures don't bother me because I know what we're dealing with.

 

[Fedup]

Like valeriedl this is a question I wondered about, personally I think anyone who has to stand and watch while a seizure happens deserves a lot of praise. Ok I have been told by my wife its love and as I see above Love seems to be the driving force, but love can only take so much. My brother-in law said he seen me have a seizure and was scared stiff, I said I am never scared because I have no idea what is going on, I am relieved when its over. qtowngirl well put, Chaz1 and JaneC you are fantastic people along with everybody else, I do not know if I could do what you do.

 

[qtowngirl]

seems to be the overall feeling doesn't it - it's not the seizures that are the hardest, it's helping, caring, thinking, solving, and most of all watching us suffer and be so hurt when we realize what just happened. you're right fedup, they deserve alot of praise, much more than they get i'm sure. ha i'm going to go give my bf a hug right now!!!

 

[Fedup]

Good idea qtowngirl, no I am not going to hug you bf, I am going to hug my wife and say thanks.

 

[qtowngirl]

yes they really deserve it. it's easy to get caught up in all this E shit and not think as much about those on the other side. i could not believe i was so out of it to call him by the names of my two best girl friends. i guess i had part of it right by knowing he was someone close tho.

 

[Fedup]

You most defiantly were on the right track and like you said this E shit gets to us, me anyway I have found myself crying over it. Its annoying and frustrating at the lest.

 

[valeriedl]

I know when just about everyone other than my husband sees me have a seizure they are petrified. My husband is pretty relaxed through it and just waits for me to come out of it. My parents can almost do the same thing but my grandparents who've seen me have a ton of them still freak out.

His son saw me have one, actually two on the same day, for his first time a few months ago and couldn't believe how calm my husband was. All my husband could do was wait for me to come out of it. There wasn't anything that he could do to bring me out of it any faster than I was going to. I think his son left early because he was afraid that I was going to have another seizure and didn't want to be there when it happened.

You guys deserve a medal or something for everything you do for us and what you go through!

 

[JaneC]

You guys deserve a medal or something for everything you do for us and what you go through!

Not at all, Valerie. Having to live with E must be a million times harder than having to watch someone have a seizure. I think we all need to do our bit - if we can - about being matter-of-fact about seizures and trying to puncture all this weird mystique that still seems to exist around them. Hysteria in the face of witnessing a seizure does nobody any good.

Qtowngirl, you're right, I can handle my daughter having a TC a whole lot more easily than know what to do about the mental health issues she experiences x

 

[qtowngirl]

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.

 

[Crash]

Yes this is an intresting thread.Iv'e seen two tonics,one at a bus stop with quite a few people around and it was intresting to see how they reacted.Some stood back like they didn't want to be involved whilst one guy,dialled 999 and was screaming down the phone,that the guy was gonna die.No matter how much i told him the bloke was going to be all right he carried on.I timed the seizure,put my jacket under his head,and with the help off another fellow got him in the recovery position and explained he wouldn't remember much when he came round,which he did quite quickly.

From say my mothers perspective,she is always asking have i taken my tablets,have you eaten today.I know she just does not want it to happen,which is perfectly understandable.A mothers love you could call it.

As JaneC has said,my brother has seen and dealt with tons off tonics.He says he's that used to it now,it doesn't bother him in fact he can tell it's coming before i do.Even wrestling with me when i come out off it and try and get out off the house.But one things for sure,everybody who finds themselves in that situation deserves a medal in my book.

 

[valeriedl]

I had a grand mal once at a large flea market. I was laying on the ground shaking around in the dirt while people just walked by looking at me like like I was crazy. Not one person stopped to see if they could help.

My husband called 911 and stayed right there with me through the whole thing, making sure I was safe. I don't think I really came completely to until I was at the hospital and didn't know why I was there.

My husband was scared to death, it was the first grand mal that he'd ever seen me have. I don't know how he managed to stay as calm as he did while the whole thing was going on but he did.

 

[qtowngirl]

Yes this is an intresting thread.Iv'e seen two tonics,one at a bus stop with quite a few people around and it was intresting to see how they reacted.Some stood back like they didn't want to be involved whilst one guy,dialled 999 and was screaming down the phone,that the guy was gonna die.No matter how much i told him the bloke was going to be all right he carried on.I timed the seizure,put my jacket under his head,and with the help off another fellow got him in the recovery position and explained he wouldn't remember much when he came round,which he did quite quickly.

From say my mothers perspective,she is always asking have i taken my tablets,have you eaten today.I know she just does not want it to happen,which is perfectly understandable.A mothers love you could call it.

As JaneC has said,my brother has seen and dealt with tons off tonics.He says he's that used to it now,it doesn't bother him in fact he can tell it's coming before i do.Even wrestling with me when i come out off it and try and get out off the house.But one things for sure,everybody who finds themselves in that situation deserves a medal in my book.

my bf too - knows its coming. isn't it unreal crash how they can sense it after being through it with us so many times?
oh poor guy, having to wrestle with you to try and keep ya down, keep you safe and in the house. yep, medal that's for sure.

 

[qtowngirl]

I had a grand mal once at a large flea market. I was laying on the ground shaking around in the dirt while people just walked by looking at me like like I was crazy. Not one person stopped to see if they could help.

that's disgusting.
(((HUGS))) - to you and your husband.

 

[Intothatendlessblue]

I have Epilepsy... but when I had my first seizure I was with my mom. She said that she knew right off what was happening, but for a moment, for one second she thought 'no, this isn't real. This isn't happening.' Then the next moment she called 911 and came around. She has been a huge support for me in all of this. It has to be love and understanding that makes seeing all it possible.

My roommate last semester woke to me having a seizure. I'd told over and over again what to do if happened, but she was so scared. She made an international call (I was studying abroad in Dublin, Ireland last semester) to her father in New York. He talked her though what to do. Afterward, she could barely look at me. We didn't really speak after that, so I honestly believe that it's got be love for the person and understanding that we are just as scared as they are.

I want to add... That I'm living in Turkey with a Turkish Homestay Mom. She is incredible. She has only known me for a month (give or take a few days) and she walked in on me having a grand mal seizure. She immediately contacted her boss, who is one of the most well respected brain surgeons in Turkey, and had him talk her through what to do. She has gotten me on his patient rotation so that he can help me get my medication adjusted. She is my hero right now.

I'm so lucky that for the most part the people who've come into my life as I'm struggling with E, have been incredible. They inspire me to keep going.

 

[pita300]

I've been out of service for a couple of days but have to commit on this. I once saw a bumper sticker that said live long enough to be a burden to your children. I thought about that the other day as my 20 y/o son was trying to get me to take lorazepam durring a cluster of partials. He's way too young for me to be a burden to him. Considering my wife could'n't handle it and kicked me out. 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.

 

[Crash]

Sorry to hear about your wife Pita,but i guess some people just can't handle it which is unfortunate.But we don't live in a perfect world as much as we would like to.But your right about your son,top marks to him as everyone gets who helps us when we really need it.It's as you say,father and son love.All the best.

Valaried,so sorry to hear what happend to you at the flea market,i think Qtown summed it up in one word,disgusting.All the best.

 

[Crash]

my bf too - knows its coming. isn't it unreal crash how they can sense it after being through it with us so many times?
oh poor guy, having to wrestle with you to try and keep ya down, keep you safe and in the house. yep, medal that's for sure.

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.