Question for those of you without epilepsy

[valeriedl]

I know there are people on CWE without epilepsy and this question's for you - How do you do it sometimes?

My husband 'keeps an eye on me' if that's how you want to word it, he'll glance over every so often to make sure I'm not having a seizure. I do so many different things during seizures and I can't imagine what it's like when he looks over and see me staring off into space, drooling, tying to talk, walking around the house and the list goes on and I'm being completely unresponsive to him while doing all of it. The worst has to be when he sees me having a grand mal, shaking like crazy.

When we first started dating my seizures were horrible and I was having a ton of them. The man I had been dating when I was diagnosed with epilepsy broke the relationship off because I know he didn't want to deal with everything that came along with me after that. I began dating my husband about a year after I was diagnosed with epilepsy I had my first seizure in front of my husband about two weeks after we began dating and ended up going to the ER. I know it scared the crap out of him because he'd never seen anyone have a seizure before, we were even surprised that he kept on dating me. The more seizures he saw me have he even started coming to my neuro visits with me because he wanted to learn more and see what he could do to help.

Since I've gotten my VNS my seizures aren't as bad and I'm not having nearly as many as I did. I almost never have an aura I just go right into a seizure so I can't try to stop the seizure from coming on in full force with my magnet and he has to use it on me because I can't use it on myself. I can't imagine what it's like for him to have to sit there rubbing the magnet on my chest while I'm shaking like crazy. After a seizure he'll tell me that I've had one and I had no clue that I did.

I know he worries about me when he's not home. He works night turn and has me text him in the morning to let him know that I've taken my meds. I don't have a problem with doing this because I'm scared that we might loose power sometime and my alarm won't go off if and I won't wake up to take them. If I've had seizures during the day, especially if they are bad ones, he'll call off work because he wants to stay home and take care of me in case I have more. I get so mad at him for doing this but half the time I don't even know that he's done it because after the seizure I'll fall asleep for a few hours and when I wake up is when he's told me he did.

There are many things he doesn't want me to do when he's not here. Standing on a step stool or chair are some of them because he's worried I'll have a seizure and fall off so I have to sneak doing things that I need to do on them when he's not around. We've had several wrecks recently in front of the house so now he doesn't want me to cross the road to get the mail because he's scared I'll have a seizure in the middle of the road and someone will run into me. This is another thing that I have to sneak in when he's not here or sleeping, I'll just tell him that someone brought the mail over to the house if we've gotten any. If he knew how much I did when he's not around he'd probably tie me to a chair.

There are so many other things that come along with me having epilepsy too. My memory being horrible is one. I'm constantly asking and telling him the same things over and over again, I know this drives him crazy. He'll tell me about things that we've done over the years and I'll have no clue that we've did them. After I came out of my very first seizure I really had no clue who the guy was that I had been dating at the time so I really wasn't too upset when he broke up with me. I know one of my husband's biggest fears, other than not coming out of a seizure, is that I'm going to come out of a seizure and not remember him anymore.

Sorry this is long but I just want to know how you do it sometimes?

 

[Forestria]

I am one of the members that doesn't have epilepsy. My husband, and now my 16 year old son do.

It is great that your husband tries so hard to be involved and help you. I tried with my husband, but he doesn't even want to talk about his E. When I first met him, I did not know that he had E because his family was one that kept it a secret that he had suddenly started having grand mal seizures when he was 10 years old. When we started getting more serious a mutual friend (the one who introduced us) told me about his seizures. I tried to discuss E with my husband and he was really uncomfortable. He actually got upset that our friend had told me. All he would say was it had been a long time since he had a seizure and he was on meds. I wanted to go to some of his appointments with him but my efforts were refused. We married in 1994 and I educated myself on what to do if he had one around me and we were fine. I have never witnessed him having a grand mal and he has only had one in the over 20 years we have been married.

Fast forward 9 years and I was pregnant with our son. My husband was terrified that our son would have E. Once he got past the age of when my husband's started, we thought he had been spared. Unfortunately, that all changed last month when our son had a grand mal right next to me. I was relieved that I had educated myself because I knew what to do to help our son during and afterward when he was disoriented. My husband still has trouble talking about all this and has been blaming himself for our son having E.

I do talk openly with our son about his seizure and we watched a video of a person having a seizure so he knew what had happened with his body. I don't want him to feel ashamed or embarrassed by it like my husband. I am always around our son and I do keep an eye on him and even check on him at night when he is sleeping. He loves video games, but I try to keep his screen play time to a minimum and involve him in other activities. He doesn't do anything where it would be more dangerous for him if he had a seizure, like climbing ladders, or swimming, etc.

I do worry about how he will manage if ever I can't be here for him. My husband is not as involved in his care (for the SPD as well as the E). Sometimes it seems he would rather not even acknowledge that our son is different. Over the years of feeling misunderstood by my husband in regards to SPD, our son has difficulty interacting with him.

Our son started meds just a few days ago. He is actually really good at remembering when it is time to take it. However, although he is 16 years old, he doesn't take it by himself. Due to his Sensory Processing Disorder, preparing his meds involves a process to make it the least offensive to his senses. Even though he doesn't like the idea of taking it, he knows it is a "necessary evil" and forces himself to swallow it.

Since my husband is unwilling to talk about his E and our son's is new, I feel like I am only at the tip of the iceberg with all of this. I am glad that I found this site and have all of you to be open with so I feel a lot less alone on this crazy journey.

 

[Fedup]

Forestria

Thank you for your insight and thank valeriedl for asking the question, like valeriedl my wife looks after me and with all that has been going on in my life lately I have depended on her a lot more than I realised. I am not allowed go up a ladder although when she is not looking, the ladder just appears and there are other things as well like Valeriedl.

 

[seagull]

I do have e becareful it don't go from care for you to empowerment to him and power over you.
I know the road only to well.If going have sz just as likely do it on floor in bed on on stool.Both you and him got live a life,So you forget stuff I know what it like the frustration for both of you it awful but it won't kill you it makes you feel like topping yourself but you won't.It small jump from caring to bulling.There certain things that you and he comfortable with staring at me is not one of them.LIFE so short you got live it as far as you can all the way.Not saying go rock climbing but you got abilities husband probably talk you out of them but go for them.

 

[valeriedl]

I do have e becareful it don't go from care for you to empowerment to him and power over you.
I know the road only to well.If going have sz just as likely do it on floor in bed on on stool.Both you and him got live a life,So you forget stuff I know what it like the frustration for both of you it awful but it won't kill you it makes you feel like topping yourself but you won't.It small jump from caring to bulling.There certain things that you and he comfortable with staring at me is not one of them.LIFE so short you got live it as far as you can all the way.Not saying go rock climbing but you got abilities husband probably talk you out of them but go for them.

There isn't much he doesn't want me to do and it's usually only when he's not around. If I get up on a chair or stool he wants to be beside me in case I were to fall off. There are just those times when he's not around and something needs to be done that he doesn't want me doing when he's not here and I can't wait until the next day when he gets home from work.

There are things that I don't like to do when he's not around either like cook on the stove or in the oven. I've had seizures doing that before and set the smoke alarm off because I'll be doing what ever I'm doing during the seizure while the food is burning. I want him to be here so he'll hear the smoke alarm beeping so the house doesn't burn down.

I don't want this post to turn into "I'm not aloud to do this or that because I have epilepsy". I just want to know you handle living with person you love and watch them having seizures, deal with the memory problems, always taking meds and all the other things that come along with epilepsy.

 

[seagull]

Why don't you try those alert thinks you wear on arm of neck and he have blue things if it there twe people that named named I care carerer for daughter seei inside on both side.She have it 24/hours got to point I tried not looking because nothing I could do.I refuse her up husband did for obvious reasons..I Britain we got places both you and cared for one can have holiday.
as others have said there many places yo can go councilling and meet there as social setting alsorts of people in same position.Honsstly you needs. That sort of thing they reall
Help.May be you and husband need write diary together show doc and he comes into see coc
Hoed My iPad changing spelling changing is edable

 

[valeriedl]

It is great that your husband tries so hard to be involved and help you. I tried with my husband, but he doesn't even want to talk about his E. When I first met him, I did not know that he had E because his family was one that kept it a secret that he had suddenly started having grand mal seizures when he was 10 years old. When we started getting more serious a mutual friend (the one who introduced us) told me about his seizures. I tried to discuss E with my husband and he was really uncomfortable. He actually got upset that our friend had told me. All he would say was it had been a long time since he had a seizure and he was on meds. I wanted to go to some of his appointments with him but my efforts were refused. We married in 1994 and I educated myself on what to do if he had one around me and we were fine. I have never witnessed him having a grand mal and he has only had one in the over 20 years we have been married.

It's upsetting that your husband didn't and it sounds like still doesn't want you to help you understand more about epilepsy. You could say it's something that you are going to be living with too, not just him. I hope I worded that right.

We told my husband on our very first date that I had epilepsy mainly because I was having a lot of very bad seizures and they were happening very often. We wanted to make sure he knew what was going on in case I had one when I was out on that date with him and what to do during it. He didn't have a cell phone at the time so we had to show him how to use mine in case he needed to. I'm glad he comes too because he's able to answer more of the questions my neuro has about my seizures because I don't know what they are like. I think he asks more questions about things while we're at my neuro visits than I do sometimes.

I do talk openly with our son about his seizure and we watched a video of a person having a seizure so he knew what had happened with his body.

My husband has videoed me when I've had simple partials before because I've asked him to. I want to see what I look like when and what he's seeing when I have a seizure. During one I was playing with the tv remote like a little kid and I seemed completely amazed with it. During another one I had a pillow in a pillowcase and I kept trying to put it on my foot like a sock. He kept trying to take it off of me but I wouldn't give it up so he videoed me doing it. He hasn't videoed me during a grand mal yet. He grabs my VNS magnet automatically and uses it on me before he thinks of doing anything else. I'm not going to get into a fight with him about that because I know he's more worried about getting me out of the grand mal than he is videoing me during it.

Since my husband is unwilling to talk about his E and our son's is new, I feel like I am only at the tip of the iceberg with all of this. I am glad that I found this site and have all of you to be open with so I feel a lot less alone on this crazy journey.

I'm glad I've found this web site too. I've learned so much from talking to people who have epilepsy than I would from books or the internet. I think I've even learned more on here than I have from drs and nurses in the hospital.

 

[Suman]

In our intent to keep our son safe (falling and hurting himself), my husband and I keep an eye on our son as much as we can. But in the process I think we inadvertently cause him anxiety because he doesn't understand why we are always hovering (somewhat) around him. (Our son has autism and has tonic clonics and recently myoclonoc seizures)

I learn more about what may be happening to him through you all! I'm glad I found this site. You are amazing people! Thanks!

 

[acshuman]

Who Can Tell The Doctor More?

I know from my own experiences that the person who is having the seizure(s) is NOT going to be able to tell the doctor(neurologist,epileptologist) about many, if not all, things that may happen while they are having a seizure. This means that if a person w/E has a significant other who is willing to be totally involved in telling what they know and have seen to that doctor they can be a great source of information! :clap:
I have great respect for anyone who does this to help the person w/E!
I had a mother:evilonly biologically) who wouldn't even attend my appointments when I saw my neurologist(from the age of 11). I know he must have had some questions about how could a parent do this to their own child! I know I had plenty at the time! The most important question was 'WHY'!
As a result of this I really look up to any parent who is trying their hardest to help their child as much as possible because this help could very well be very important later in that child's life and the way they are able to live their life! :clap:

 

[valeriedl]

I know from my own experiences that the person who is having the seizure(s) is NOT going to be able to tell the doctor(neurologist,epileptologist) about many, if not all, things that may happen while they are having a seizure. This means that if a person w/E has a significant other who is willing to be totally involved in telling what they know and have seen to that doctor they can be a great source of information!

This is absolutely right. If my husband didn't come to my neuro visits with me all I'd be able to tell him that was that I'd had a seizure and not be able to give him any details about it and the details of the seizure are very important. I usually don't even know I'd had a seizure either unless my husband, or someone else, sees it happen. I might think I hadn't had any seizures during a month when I'd actually had five because I'd had no clue the other's happened.