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Coopyhead

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Hi everybody,

I'm new to the forum. I don't have epilepsy, but I just started a relationship with a girl that does. This is my first experience with epilepsy, and I'm trying to learn as much as I can so I can be a good partner. Medical information has been easy to find so far, but advice for dating someone with E has been scarce. I understand it can vary greatly from person to person, but anything would be appreciated.

She has non-motor focal onset seizures, aware and impaired. I've seen her have one for certain, and I believe she has had more but they are so subtle most of the time that she can pass them off as being tired. She has been dumped in the past because of her condition, so I understand her apprehension and don't take it personally.

I want to be there for her, and support her when she needs it, but I don't want to give the impression I think she's incapable or broken. Any tips from caretakers out there? Advice on how to handle the post-ictal recovery? General do's and don'ts?

Thanks everybody!
 
Hi Coopyhead,

I think what you are doing is wonderful and I like how you don't want to let your girlfriends epilepsy get in the way. Everyone is different but I found if the guy would just
accept me and carry on even after I had a seizure and not get all worried about it I was very pleased. I've had absence and complex partial seizures for most of my life and I blank out and sometimes wander around during my seizures. If your friend should have a really serious seizure the best thing to do is protect her so she doesn't get hurt and then if she wants to sleep just let her rest. When she feels better just carry on like it was no big deal this is what my husband did when we first meant and we've been married for 31 yrs. now and he even supported me during 2 brain surgeries and acted like it was no big deal. I know I didn't like it when a person was over protective of me or got scared when I had a seizure so I was always up front when I was dating and told the guy I had epilepsy and what to do if I had any seizures that way things went much easier than trying to hide it from the person. I wish you and your girlfriend the best of luck and May God Bless the Both of You!

Sue
 
Exactly the type of advice I'm looking for, Sue. Thank you so much for the reply.
 
Hey Coopyhead, good for you for reaching out and getting informed on your girlfriend's behalf!

It's best to be matter-of-fact when talking to her about her seizures, and you should follow her lead when she tells you her preferences. (In this repsect, you might find it helpful to think of her seizure disorder the way you might think of asthma or allergies.) Ask her if she wants you to keep track of when they happen and how long they last (info that can be helpful for the neuro).
 
Thank you Nakamova! I was thinking about using one of the phone apps for tracking them.
 
Hi Coopyhead. I second everyone else in what they're saying. I'm glad you want to be involved. Nakamova suggested tracing her seizures, and I highly recommend using seizuretracker.com. That helped me see a pattern in my seizures which made me see what I needed to do to adjust my meds and get them to a therapeutic level without side-effects. after 33ish years of with hundreds of seizures a year, I've now been seizure-free now for 3 1/2 years.
 
Hi Coopyhead,
Welcome to the forum. It's nice to see that you are so interested in epilepsy for your relationship. It can be very difficult to deal with at times but doesn't have to be. Keep communication open and good luck!! Jeanne
 
When my husband and I started dating about a year after I was diagnosed with epilepsy. I told him right from the start that I had epilepsy and seizures were very bad and very frequent. It was about two weeks after we'd started dating when I had my first seizure and he had to take me to the ER. My parents thought for sure he was going to leave me after he saw what he was going to deal with if we kept dating. He said he wasn't going anywhere he really liked me.

About six months, and I don't know how many seizures later, he started going to my neuro visits with me. He could hear what my neuro was telling me about why things might be happening, could answer questions that the neruro had about seizures that I'd had in front of him and if he had any questions about something he'd ask. He learned a lot by doing this.

Let her know that if she has a seizure to tell you, she doesn't need to be afraid to do that.. You want to learn as much as you can about her epilepsy and this will help.
 
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