Hello Do any of you feel this way?

Meg - posted on 07/31/2010

I know exactly how you feel... About a couple months after my baby was born this past fall I began to have bad complex partial/ grand mal seizures... It was due to the drop in hormones after giving birth... I had to have someone with me all the time, i had to stop nursing and I could barely walk because i injured my back during one of my seizures... I felt so bad for my baby and I felt like such a bad mom for letting it happen... I was put on extra meds but i also found ways to relax my brain when i felt a seizure coming on... Anyways, I believe that children of parents with epilepsy or any other disorder or disease are more likely to have compassion and empathy for others. If anything having a parent with health issues I believe in the end will be more of an asset rather than a deficit... Take care

Lady Heather - posted on 06/15/2010

Yeah, I don't drive and while I don't have grand mal seizures anymore (knock wood), I get really awful partial seizures sometimes which prevent us from doing anything at all. On those days I have to close all the curtains (I'm photosensitive) and just sit there in the dark. I also tend to get irritable when having an especially seizure-y day. I have to work really hard not to take it out on Freja, and then I find sometimes that I take it out on my husband when she's gone to bed. I feel bad for him too.

There seem to be so many things that we just plain can't do. My friends all take their kids to the pool and we can't. They drive to different parks and we can't. It takes three hours to do any kind of shopping at all so she gets tired and cranky.

But I love her more than anyone in the world and I figure that's got to count for something. I see some parents who aren't even very nice to their kids. Some poor people get REALLY awful duds for parents, so I think to just have an illness to deal with is not the worst thing in the world. My children will always be loved and hugged and encouraged and that's really the best a person can do.

Kristee-Lea - posted on 01/07/2010

I feel exactly the same way.
I had seizures at 18mnths old then they went away, came back again when i was 12 and i was having at least 3 Grand Mals a month. They controlled that with medication and i was seizure free except for an odd one where i would forget meds for about 7 years then i had my son in 2008 and i had 3 grand mal seizures withing a matter of 12 hrs when he was 3 weeks old. Scariest thing in my life, i thank god that i didnt have hold of him at the time. I remember coming to and my daughter (2006) was jumping up and down on my stomach she thought it was a game. Strangely enough i had no problems seizure wise having her in 06. I am now currently pregnant with boy#2 and am petrified the same thing wil happen again :( I only have about 4wks left.

I am allowed to be alone as i am SAHM while daddy goes to work. I dont drive either. I understand about the meds too i am so over the effects.

Dena - posted on 12/30/2009

I forgot to add this...have to wonder how I forgot to add anything given the length of my post...lol. Anyway, for those of you who can have animals look into getting a Lab. This particular breed can be trained as seizure dogs and once certified where an orange vest (which they are very proud of!) and can go anywhere that you do including stores and restaraunts. For whatever reason this breed is very attuned to this condition ... some sense before a seizure occurs and you have to learn to listen to them when they INSIST that you sit somewhere while others take on a mothering type role after the seizure has occured. I didn't know this about Labs when I got my Dylan (black lab) but read up on the breed and was surprised to find out that they train them in this area. Dylan has only seen 3-4 in his life but either I'm not paying close enough attention because I've become so well controlled on Kepra or he's the mothering type but on the few ocassions that he has witnessed a seizure he keeps me exactly where I'm at until he feels comfortable with me moving even if that means I'm on the ground...he simply will not let me up. So, to make a long story short (to late, I know) any of you that are able to have animals I would encourage getting a lab. BTW, they are wonderful family animals as well.

Dena - posted on 12/30/2009

First of all know that you are not a bad mother just because you have a seizure disorder and trust me when I say it will make your children stronger in the end. My son is now 18 and has dealt with my seizures in one form or another since he was born. He now is very much in charge on the rare ocassions that I do have a seizure. He has learned how to care for me and is wonderful.

I began having seizures at 15 and they put me on Dilantin which worked like a charm. I went off all meds during my pregnancy and felt wonderful...not a single seizure. However when I finished nursing and started back on the Dilantin my system had changed so much that it no longer worked so they put me on Depakote which again worked but by the time I was finally able to get a doctor to take me off of it because of side effects I'd put on over 100 pounds so I can relate to what you're saying about the weight gain. I now take Kepra which for me has been a God-send! I'm seizure free again and starting to loose the weight with no side effects. Keep that name in mind if you go thru another med change because it definitely works and has no sedative effect for me like the Depakote did.

I know this disease makes life hard sometimes and there are times when you even feel like giving up and just never leaving the house but there is a whole world out there. While some people may react oddly to your situation most are very understanding and even helpful. Other than your bracelette/necklace indicating that you are an epileptic nobody needs to know (I have a friend that felt she had to tell everyone and worried about how they would treat her) that you have this condition unless you are close enough to them that you feel at ease telling them.

I'm 47 and have been dealing with this since age 15. You can do this...it's easier to say than do but be strong and proud of who you are! Remember that you are first and foremost Nicole and having epilepsy is just a part of who you are. God bless you and your family. Sometimes we feel alone but he is always there even when nobody else is.

13322 - posted on 12/01/2009

I feel the same way too. I feel helpless But I have 4 kids that got stuck with me. And the 2 older ones are starting to look at me with this why did you do this to me look . Cause all the way up to last year we we doing some what ok . I had grande mals when my oldest was 3 -4 but they were now under control but with our last 2 babies it cause my seiures to switch to something different and they have become so out of control that i have 3-7 a week and it scares my older 2 kids.Now I dont drive , they sold my car I basically live in my house and it sucks my out lookin life has changed and im moody all the time they say. So i know where you are coming from.

Jill - posted on 08/24/2009

Hey...I have grand mal seizures - fairly well controlled, but my daughter will not go out to play or eave me alone! I know she is worried (9years old), but when it comes time to help Mom out (when I seize) she just yells and cries. Yes, she did get the short end of the stick and she seems to like poking me with it too! Part of my problem is I have onset with stress...she knows this yet yells at me for no reason, I try to remain calm...



No you are not alone, yes I wish I could be that perfect "kool-aide" mom - it's never gonna happen, but I do try. Be positive, it helps to vent your frustrations at a place like here, rather than on yourself or family. Holding in is not good for anyone!