Hi

[dfoles]

Hello. I'm 25 and my gf is 24 years old and has both petite and grand mal seizures. She was diagnosed when she was 8. During high school it got to a point where she had up to 8 seizures a day, and she had to miss a good chunk of school because of it. She's fallen down stairs, in the shower, you name it. But never broken a bone. She's never driven a car, other than a handful of doughnuts in an empty parking lot. Her triggers are stress and sleep deprivation, if anything. Everything that makes epilepsy more complicated is what she has. She's got generalized epilepsy. She's been on almost all meds at one time or another. She's got a VNS.

We've been together for almost a year now. I was aware from the beginning and it was and is not a problem. I know what to do when she has a seizure. We're so happy and in love. She's such a bright awesome person. Unfortunately her parents are getting divorced and that began relatively close to the first seizure she had while we were together. We made it 3 months before I witnessed my first seizure. Since then she's seemed to have them once every 2-3 months, usually surrounding being around or talking to the parent that broke up the family.

Short of her physically getting hurt, falling down stairs or whatever, I've experienced a good bit of the unfortunate places to have seizures: at the dinner table, out at a restaurant, laying in bed, and now tonight while I was driving her to work. I've already experienced her not recognizing me as she's starting to recover (which she remembers within 10-15 minutes). I fear for the day she has one in her sleep next to me. I'm a very heavy sleeper, and I would feel terrible if I didn't wake up during it to help her.

I love her so much, there's no doubt in my mind I want to marry her. But it's so scary and so stressful sometimes.

I just wanted to see how significant others handle their situations. Any encouragement or words of advice would be appreciated

 

[Crash]

Hi dfoles,
I think what your doing is exellent,you are seeing past the condition and just carrying on with the woman you love.Just be there for her and give her support.From what you have written i don't think you are doing much wrong.This is one off the best posts i have ever read on CWE.

All i can say is keep it up and a massive well done :clap: All the best and keep us posted if it be questions or just to let us know how your getting on.All the best to the to off you!

 

[MrE]

We all see what we want to see...you choose to see a life with your girlfriend regardless of the condition/situation...a life where you two are happily married...a life where you will do anything and everything in your power to support and be there for her (vice versa)...a life where you treat every single day as a wonderful blessing despite the phantom darkness that hovers...a life together...forever...

I choose to express myself honestly from the bottom of my heart...take it from a person who is already married but considers "marriage" nothing more than a word (true love isn't written on paper...it's engraved deep within your soul)

 

[N Sperlo]

Dfoles,
I couldn't have put it any better than these two. You are already being the best husband you can be before you're even married. My relationship hasn't changed since I got married, and it is fantastic.

I really have put my wife through some sort of hell. Without her, I wouldn't have known what was going on. The punching, kicking, and thrashing in my sleep was put up with. Eventually, I had that seizure that freaked her out. I'm lucky enough that I've only had one rough one.

Keep on being you. It sounds like its working.

 

[jyearta]

Your GF is blessed to have you.

I didn't know I had E. until after I married (long story) my husband got me to a Dr. and after we were told what was wrong he has never made me feel bad about myself. He then had to talk to my mom and Dad because of the way they treated me for 18 years.

 

[cadsgj]

dfoles, major thumbs up for you here. Me, I have been having seizures for just shy of 20 years and in this time there has been only two who have ever showed they cared, my father when i was in the hospital 6 weeks, and my mother. My wife, she will remind me often to take my medication and I do thank her much for that, but she really goes no further. A few others will ask a question here or there but really, in "18+" years friends and family go no farther. So dfoles, major thumbs up :tup:

 

[Treu Rivers]

Your girlfriend is lucky to have you. My ex could not handle it and ran for the hills.
Just stay there to encourage her and keep loving her without doubt.
As far as seizures while sleeping goes....that's the only I do seize and you may be a heavy sleeper and so was my ex but I woke him everytime I began to have one in my sleep.
Just be the best support that you can be.
Very nice post.

 

[valeriedl]

It sounds like another seizure trigger for her might be stress if she's having them after talking to her parent. I'm sure the divorce is very stressful for her. Stress and lack of sleep are two big seizure triggers for me. If one of these things is going on in my life my husband and I can almost bet that a seizure is going to come on very soon.

I've had epilepsy for about 10 years now and my husband and I have been together for 9. We pretty much learned about epilepsy together through the years. It's good that you know what to do and stay calm when she has one.

After coming out of many seizures I have no clue who the person is that I'm with, who I am or where I am. These are some of the questions that my husband asks me when I'm coming out of the seizure. When I can answer them right then we know that I'm ok. There was one seizure that I had were I kept calling my husband by my cat's name, insisting it was his. It did take me about 10 minutes to realize who he actually was.

I think if you can name the time, place or thing that I've done I've had a seizure doing it. I've had them in restaurants, stores, in the car (I don't drive but he does however I did try to take the wheel). I've had them while doing just about anything in the house. Cooking, cleaning, in the bathroom, watching TV.

I've also had them while having sex. My husband said that I was having a really good time, then he realized I was having a seizure. It did freak him out a good bit but we get a good laugh about it a lot.

I don't know if I have them in my sleep, my very first one was in my sleep though. My husband and I sleep in separate bedrooms. He snores to bad, I'm a bed hog and mainly because our time schedules are completely different. He goes to bed a 9pm and gets up at 5am for work. Since I don't work I pretty much do what I want. But I was waking him up getting in bed and he was waking me up getting out so we decided since we've got two bedrooms it would just be easier for each of us to have our own.

I went through a ton of different meds and dosages through the years but nothing really seemed to help much so my neuro suggested a VNS. I got it in 2007 and it's helped out a ton. I'm still having seizures but not as many and they aren't as bad.

It's great that she has you! I can't even begin to imagine how stressful it is to be with someone who has epilepsy not knowing when they are going to have a seizure and how bad it's going to be.

One major thing is don't be too over protective of her (but it sounds like you not). She needs to be able lead a real life. Don't spend all your time worrying that she could have a seizure at any time and do something that she might hurt herself. My husband is like this with me a good bit and it drives me crazy.

I know you'll get a lot of help on here!