Question for those of you without epilepsy

[valeriedl]

I know there are people on here without epilepsy and I have a question - How do you deal with it sometimes?

When my husband looked over at me sitting in the chair he saw me shaking like crazy with drool hanging out of my mouth clear down to my chest. I know he didn't panic because he's seen me have many seizures like this but I know it has to scare the crap out of him.

Once he made sure I was out of the seizure and ok he said he called his dad because he just needed someone to talk to. During the middle of the conversation he looked over and I wasn't in the chair anymore. I know he started to panic then because he had no clue where I'd gone, I like to walk around during many of my seizures.

He ended up finding me laying down on the couch and I'd pulled a blanket over top of me, sort of like I was hiding. He told me I'd had another seizure shortly after this. I don't remember having either of the seizures.

Watching someone have a seizure has to be a hard thing to do. You are completely aware of what's going on but the person having the seizure isn't.

 

[Blonde Angel]

I have to be orgAnized and plan ahead.
I sometimes need to have a good cry when my girl can't participate in an activity she can't attend to.
I am stressed when going away on holidays, especially in transit.
I have to deal with some stupid people who are ignorant when I'm asking for a later checkout time in a holiday house or hotel/ resort because my girl has had a seizure. I'm not wanting a later checkout to get sleep in thanks.... I've had one idiot who was told me to pay for the extra time because it was peak season.. How rude is that?

I have to keep midazolam in my bag everywhere I go.
She scared me once in the spa bath and she has fallen in the shower.
Swimming activities requires close supervision at all times.
My girl does not give me or others hardly any warning pre seizure, very challenging.

Plan and time goes out the window for all not just my girl when she has a seizure.
So, the emotions include frustration, anger, and plain hate living with the indignity of epilepsy.

 

[valeriedl]

I can't believe that they wanted you to pay extra! I don't even think there is a word for that!

Once when I was down town Pittsburgh it was really hot and I had a seizure. The closest place to go into with AC was a casino. My husband told the lady at the door that I needed to come in and sit down and get something to drink because I was having a seizure, which you could obviously tell. She told my husband she wasn't going to let us in until she saw some ID. No one under 21 was aloud in the casino. My husband told her that he didn't want to let go of me so that I didn't walk away and couldn't he tell that we were obviously over 21! I was in my mid 30's and he was almost 50. Luckily his son was with us and was able to get my ID out of my purse and get us in.

I have a VNS and if I'm having a seizure and my husband can't find a magnet I know he freaks out because by using the magnet it will bring me out fairly quickly.

I also have almost no warning that I'm going to have a seizure. Someone will just look at me and see I'm having it. That's really the only bad thing about the VNS. If I feel one coming on it will stop the seizure. There have been many times that I must feel one coming on but I don't catch it in time because my husband will see me using the magnet on my stomach, leg or other part of my body. He'll even find it laying somewhere beside me too.

I know my family just wants to be safe about things but I have to draw the line somewhere. I feel bad about it, for them, but it's because of my age more than it is anything else.

I'm in my late 30's and the first time I went swimming after I was diagnosed with epilepsy, I was in my late 20's then, my parents wanted me to wear floaties on my arms like little kids do. I know they were just worried about me having a seizure while I was in the pool but I wouldn't do it. I think they stood there panicking until I got out.

Everyone was scared, even me, that strobe lights would cause me to have seizures. We found out that they didn't because of watching things on tv. And that was only by accident though because they always made me close my eyes when something was strobing. One time I didn't and that's how we found out. When I went to my first concert after being diagnosed we knew that there was going to be strobe lights there and they wanted me to wear an eye mask through the whole thing. I told them that we knew strobe lights didn't bother me so I wasn't going to do it. I wasn't going to go to a concert to just listen to the band, I wanted to see them too.

After this last seizure when my husband told me that he called his dad because 'He just needed to talk to someone' I almost started crying! I know he didn't mean it in a bad way I just wish it was me that he was able to talk to.

 

[Dutch mom]

Me and my husband stay calm, we make sure Joni doesn't hurt himself and we comfort him when the seizure is over.
Joni has liquid clonazepam for in his cheek in his wheelchair bag with him for in case a seizure lasts to long.
We are dealing with this for 15 years now so I guess we are kind of 'used to it', although we're always sad to see him seize.
It is more frightening for other people and strangers to see a seizure.
When being out I do hate strange people staring at him having a seizure and I try to ride him to a place out of sight for as long as the seizures lasts.

 

[Fedup]

Blonde Angel, Dutch mom

I think both of you and everybody else who goes through what you do are fantastic people. Thank you.

 

[qtowngirl]

I can't believe that they wanted you to pay extra! I don't even think there is a word for that!

:agree: or here's two: fucking pricks. that is awful.

I know he didn't mean it in a bad way I just wish it was me that he was able to talk to

:agree: he called my bff once to talk and get her opinion, i found out weeks later from her and wasn't too keen. wish he could have talked to me too, or at least tell me he had phoned her. but he needed to or wouldn't have done it, so tried not to let it hurt.

 

[Blonde Angel]

@ fed up I'm just being mum doing what she's gotta do, the only differences is the epilepsy and autism .

@ Dutch mom, you have learned the acceptance phase, I am still in angry mode and watching seizures still terrifies me but I record and time it and have that midazolam ready I dread the day I have to use it. Yes I hate it when some people gawk and have no manners, well one just to focus on their child and realise you'll never see them again... So don't worry.
@ Val, you have a good man in your life and he just loves and cares about you, when we see our loved ones have seizures no matter how many times. I am truly frightened, he means well and wishes to protect his princess which is you. Your parents are just doing their job ... Worry too much and just trying to keep their girl safe.
@ Q town girl... Yeah the guy at the resort was horrid, but most people are understanding and tolerant . I've learned to make sure I book somewhere that will offer flexible checkout just in case. I don't want pity just understanding .
Some times I get discounts. I won't say no....

 

[Fedup]

Blonde Angel

Do not sell yourself short, yes you are being a Mother but you are more than that as well, like all the Mothers and Fathers. Thank you.

 

[Zara-Newman]

I started having my seizures at 15 and found it hard to keep friends throughout my late teenage years and even now being 22 - when I meet people and they think I am awesome, something changes when they find out I have epilepsy and I don't know if they think I will break or what, but I have found it really hard and I have a small group of friends who are great to me, but no guys want anything to do with me, and the ones that have in the past end up cheating and have all blamed it on my epilepsy.

What I am saying is I hope I find someone as understanding as your husband, the only people I have are family. It is always going to take a toll on people, but it must mean that you have something very special together xx

Sent from my SM-G920F using Tapatalk

 

[Cherriuz]

My name is Ian, this is my girlfriends account, she is the sufferer so asked me to put in my own words about my experiences

I've lived with Sarah for just 15 months now, and thankfully in this time their have been very seldom seizures and the ones which have occurred have all happened when we've been laying in bed. Admittedly this is easier.to.for with as she is already in a safe environment so I just make sure there is a pillow against the wall. I leave Sarah to progress through the seizure and then once she 'reappears', I just hold her and comfort her until she fully recovers and then I answer any questions she has about the episode and let her know the details

If anything happened in a different setting then I know I would just need to keep a calm mind and make sure she's comfortable and safe whilst the seizure is in effect

Sent from my D6503 using Tapatalk

 

[valeriedl]

My name is Ian, this is my girlfriends account, she is the sufferer so asked me to put in my own words about my experiences

I've lived with Sarah for just 15 months now, and thankfully in this time their have been very seldom seizures and the ones which have occurred have all happened when we've been laying in bed. Admittedly this is easier.to.for with as she is already in a safe environment so I just make sure there is a pillow against the wall. I leave Sarah to progress through the seizure and then once she 'reappears', I just hold her and comfort her until she fully recovers and then I answer any questions she has about the episode and let her know the details

If anything happened in a different setting then I know I would just need to keep a calm mind and make sure she's comfortable and safe whilst the seizure is in effect

Sent from my D6503 using Tapatalk

:hugs:

I just need to give you a hug! You sound so much like my husband.

I only had epilepsy for a year, when it was at it's worst, when we started dating.

When I had my first seizure with him I know it scared the crap out of him. You can try to describe what someone's seizures are like but you don't actually know what they are like until you see on actually happen.

We moved in with each other about a year after that and he's gone to all my dr visits with me and seen me have more seizures than anyone else. He's gone through all my med changes and side effects and pretty much knows what's happening and why. He has to tell my parents why I'm acting the ways that I am - It's not me it's the meds that are making me do this.

His worst fear is that when I come out of a seizure I'm not going to know who he is. This happened with the guy I was dating when I had my first seizure. I've thought he was the cat, his brother and so many other people when I'm starting to come to but, I know he's panicking then, but when I'm completely out of the seizure I know who he is. I know he just wants to hug me when I actually call him by his own name.