What is it like when a close relative has epilepsy ?

[Joyful]

Thanks valeriedl. My husband is much the same way. I know I don't have to apologize - I'm not even sure why I do.

I've always done that since I was a little girl. As soon as I'd start jerking I'd be trying to apologize. After it was over I'd cry, "I'm sorry, Mama." It just kinda' became habit. I knew I didn't have to say I was sorry. I just did.

Noone has ever given me reason to apologize and even now my husband and I can laugh about it(my apologizing) together after it's all over.
I just tell him, "Maybe that's just a part of the seizure!"

I know I'm not a burden. It can feel that way at times, though. The main reason I started this thread is because I wanted to get the perspective of those who have to care for loved ones who have epilepsy. I know what it's like to have it, but I don't know what it's like to live w/ someone who has it.

I think back to when I was little.......how my sisters who shared a room w/ me must have felt growing up - being awakened at night b/c I was having a seizure.....
I don't know, I'd just like to hear from people like that to get their opinion.

Please, I hope I didn't give off the idea that I'm depressed or anything. More like, curious.


And thanks, to BlondeAngel for writing w/ an honest opinion.

 

[seetseet]

Hi Blonde Angel,, I am really glad you wrote on this thread because you're just the kind of person I have been looking for!
This is going to sound way out, but I am only now (since my first tonic clonic on 2012) starting to comprehend what you as family/partners and carers who love someone with epilepsy, go through when a seizure happens, and then waiting for the next one to happen.
I always thought it was just about " being nice" and then I thought he was being overprotective, but a few days ago, I got an answer that shocked me, where by he said it is like watching someone dying..
My hubby was saying, even though he "knows" it's epilepsy, it's such a sight that you can't NOT think it might end in death. And now, I cannot understand how he is coping at all.. I have no idea how you as people watching us go go through these seizures, constantly waiting for them to happen, just incase that this could be the one that might be worse than the rest..

Is this the same in your case? Like is it really that bad?
Or would you say you are somewhat "used to" the sight and experience? Or is this something that could never be a norm so to say?

Do you (and your family around your daughter) do something for support wise for yourselves?
Do you know anyone in similar situation to you?
Or do you perhaps know of any forums etc for partners, family and/or carers?

Sorry for the million questions, but I am on a full information hunt , (and if there is anyone else out there reading this please don't hesitate to respond with any info and experience)
(Pm's are all good too)

 

[Joyful]

Hi. This is all so new to me. This kind of attitude towards epilepsy, I mean.

I have never thought of it as a disease or as a handicap of any kind. It's more like a nusiance - a pest that won't go away. My family has always treated it the same way. Having a seizure is just one of those things that happens sometimes - like falling off of your bike - you just get back up when it's over. That's how I have come to accept it.

Then I got to wondering.....is this more difficult for the people around me ? How do they feel ? Thanks for that insight, seetseet.

There were a couple of times in my life when I did almost die. The first time I had a big seizure when I was 9 (I don't remember it but my motold me that she thought I was dead when she found me.) and once in my adult life - about 13 years ago. I woke up in the ICU not knowing what had happened. It turns out I had been there for days. I don't remember much.

Not sure why I'm writing all of this. I think I just need to share all of what is going on inside me w/ someone. I never did before - not to this extent.

Maybe I'll write a book....whatcha' think guys ?

 

[seetseet]

Hi Joyful, I just found this thread from back in 2012, it was a bingo for me, thought you might be interested: http://www.coping-with-epilepsy.com...sy-sometimes-support-needs-support-too-15011/

 

[Blonde Angel]

@seetseet & Joyful

I think the best way to look at epilepsy is try to have an open mind in that there' s vast experiences by people who have to deal with epilepsy.

seetseet you mentioned that your Hubs is frightened when he observes you having a seizure. I can understand because when I see my girl looking blue and having the most awful facial expressions..it does look like death.
Maybe get your hubs to video you? go take an insight to yourself?

The advantages you clearly experience is the ability to talk and express thoughts feelings etc//I don't have that luxury with my girl. I have to go by her behaviours and make a decision to the best I can. I have to be her advocate and "voice" to those who are involved in her life.
Communication and honesty is the best thing in any relationship with who you love and care for.

 

[Blonde Angel]

One of the biggest reasons I come on this forum is to get feedback on anything relevant that may affect my girl in a positive & negative way, to get insights on people's various experiences eg like med side effects.., peoples challenges that may be pertinent to my situation..etc.

 

[valeriedl]

As far as side effects go I think the one that my family doesn't understand the most is Keprage from Keppra.

Before taking it I was usually calm about everything and great around kids. Now I can go off over a drop of a pin. I will yell at kids for almost anything they do even though I know it's normal thing that kids do, like run around the house, but I just can't handle it. I'll get yelled at for yelling at kids, or yelling about anything else, but I just can't help it.

Luckily my husband knows that the medicine makes me tired and that's why I take a nap in the afternoon. He knows it's not because I'm being lazy. If I don't take a nap he get's worried that I could have a seizure the next day because he knows that being tired is a huge seizure trigger for me.

When I have a seizure I'm usually pretty tired the day after it. My husband really doesn't want me to do anything except take it easy and sleep as much as I want because not getting that sleep could trigger another seizure.