Hello...

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

CaptKevswife

New
Messages
2
Reaction score
0
Points
0
Hi, I'm Kharissa. My husband (CaptKev) was just diagnosed with Epilepsy this past month, and has been lurking around here so I thought I'd join too. April 23, we go married and 2 weeks later he had his first grand mal seizure... He broke his nose, his t1 spinal process, and suffered from a severe concussion... since he's been put on Keppra but has recently suffered from about 3 absent seizures....


I know you can't live your life scared, but I just can't make myself stop thinking about him having seizures.. it's like they control MY life.... I always worry or wonder if he's having a seizure.... I feel like anytime now he's going to have a grand mal and hurt himself again.... it's put alot of strain on our marriage recently...

I was just wondering if anybody has any advice...
 
Welcome Kharissa

Nice to have the Captains other half join in.

I've had seizures all my life, mostly partials except for about 15 tonic/clonic (grand mal) seizures. Since I've had them for so long they don't really scare me. I have had a lot of friends that have felt over-protective and even though their intentions were well appreciated the friendships often disappear partly because even though I can't do things like drive I don't like being treated as less than "normal" and partly because it eventually becomes a burden to always worry about someone being OK and friends are supposed to be fun.

Sorry I can't give anything more than my own experience.

There's lots of people here who are relatives & partners of those with epilepsy that I"m sure will be able to give more and better advice than I can, just give them some time to leave a message. In the meantime check out the nooks & crannies and make yourself comfy here.
 
Hi Kharissa, welcome!

It can be hard to see someone you love diagnosed with epilepsy. Right after diagnosis it's not unusual for both the person with the seizures and his or her caregiver to be very anxious and scared about the seizures and how they will affect their lives. This is very normal! Once you get a handle on things, the anxiety will moderate. I've had epilepsy for over 10 years; at this point I'm not troubled by anxiety over seizures. And I've had over 20 grand mals. This may be hard to grasp but: They look worse than they are. Yes, there's the potential for injury, yes they are traumatic in many ways. But they rank low on the list of scary, damaging events for me.

A health issue CAN put a strain on a relationship, and sometimes it can help to get outside counseling, for you or your husband or both together. If you feel like things are getting worse, (or even you don't), consider asking for referral to a therapist.

Best,
Nakamova

Best
 
Hi Kharissa,

I just wanted to share my view from the other side of the fence. My seizures have gotten really bad recently and my friend is afraid to leave me alone. :dancing:

Tho I love her for this, it also makes me feel horrilble about myself. I don't wanna feel like I need a babysitter.

my advice is let up a bit, and if something happens, try to remember that everything happens for a reason, and it's not ur fault!!!! :D

Things will get better
:e: :rose:

Mia
 
CaptKevsWife,

Welcome to the forum!

It's really normal to worry about seizures, especially at first. There are a lot of unkowns. As your husband's seizures become more under control you'll worry less. Or if they aren't you'll find coping strategies.

I agree with the above posts. Counseling is really helpful. CaptKev is going through a lot emotionally right now, and you have your own set of emotions to deal with. I understand how difficult it is to have a spouse who has a life-altering disorder. Please get the extra help sooner rather than later. It's important to get things as steady as possible. It'll help being in here, too. You can lean on us for support - that's what we're for.

Hang in there. It DOES get better.
 
Thanks Y'all! Y'all are so sweet! I'm trying not to be a babysitter, and I agree... once his seizures are more undercontrol, I really think I can cope with it easier... Right now It's just hard for me to accept he even has epilepsy...
 
Hi Kharissa,
If you go to my profile you will see how I found out about my first seizure and it happened eleven years ago this October. Throughout this ordeal my husband has been my best friend, my spouse, my rock and my soul mate. However, I have been his, too. I was diagnosed later in life not when I was a child or from birth like your husband, but that doesn't mean this isn't something that wasn't in our brains. I keep going over and over in my head why I have this. The neurologists that I seen can't give me an explanation but there has to be one. Epilepsy has been an eye opening experience for both my husband and I. Your husband is still prince charming just with more to offer. You will have more to offer the relationship as your years unfold for the two of you, too. The best thing to do is make sure his seizures get under control so he doesn't experience any more seizures.
 
You must log in or register to reply here.
Back
Top Bottom