who here has a romantic partner with epilepsy

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I have recently ventured into a relationship with a person who has seizures. I also have seizures, so I am understanding towards their situation.

Is there anything imparticular that you would like to know about our relationship and how we cope with each others seizures?
 
Tons it is hard because my pertner feels any affection is almost smoothering that's not my intent but iam very much in love with my partner and I miss the affection between us and sometimes I feel its personal towards me I know better but not understanding that's the only little seed growing some times
 
Kim my phone is what I use for internet its strange can we e mail or text I have free text. Email is ..... (send in PM please, thanks ...Meetz) or text my phone won't let me add u as a friend ? But I really need some help a lot of questions and really no one to talk toso all alone with some things :(
 
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My wife has epilepsy. I do not.
 
My husband has epilepsy, I do not. Yes, I agree its' tough for the partners. We are the forgotten in some ways (meaning sometimes others don't notice the effect it has on us, or folks don't realize how we think about how to handle various situations should a seizure occur. It really never leaves you.) And yes, he feels terribly guilty sometimes, but he'd do the same for me. It is what it is. A good sense of humor helps. And "this too shall pass." We try to be thankful for the positives.
 
He went from 1000 mg. Keppra per day, and now is on 1500 mg. Keppra per day. Yes, slight mood changes (irritable) - then again, I think it's also just the frustration and newness of dealing with all this, too - natural emotions. I notice if he gets more tired or hungry, this can also make the irritability worse, so I try to suggest relaxing or eating something. But yes, sometimes those suggestions appear to seem smothering to him, even though I'm trying to help. It's hard to go from doing what you want to having to be conscious of something (like a trigger) to avoid a possible seizure.
 
We went through a period where my wife was having great difficulty managing her seizures. She was also not 100% committed to her AED schedule (she reviled taking any AED). I got into the habit of asking her if she had taken her meds after every meal (when she was supposed to take them).

I'm not gonna lie. This bugged the sh*t out of her. We had many "discussions" about it.

I never took anything she said personally though. I understood the framework that was driving her reactions. I just kept reminding her that I only asked because I cared and loved her.

It took a few years, but after some pretty bad (some might say near death) experiences, she finally decided that adhering to her med schedule and avoiding the ER/hospital was worth total commitment.

I still ask her about her pills every meal (when I can). It no longer annoys her. She has a sense of humor about it now. 99.9% of the time, her answer is yes these days. When it's no, it was an honest mistake and she genuinely appreciates that I asked/reminded her. Once in while, I'll forget to ask her and she will remind me to ask her (in a good way - it's a joke we share with each other now).
 
Thanks, Bernard - I've only noticed it with the increase. Got the B6 complex (with other Bs), so hoping that will help. Actually, I'm going to take it, too. Maybe it'll help me - ha. I also remind, and here's another reason: don't know if this has happened to you - but especially after the seizure - maybe up to a day or so - he doesn't remember conversations we had even though he's fully out of the seizure. Also doesn't remember taking a Tylenol, etc...so I've left notes on the door (if I won't be around every second) like "remember you took "X" at "X" time. Don't want to double take other things. --D
 
My partner takes 3000 mg a day and feels a hug kiss or cuddling is smoothering iam almost afraid to show any affection I don't want to push him away at the same time I don't want him feel alone any suggestions
 
ddr1166 said:
... Got the B6 complex (with other Bs), so hoping that will help. ...
Click to expand...

Be careful with the B vitamins (complex formulas). Some of them can exacerbate problems. It's always a good idea to discuss them with your doctor.

ddr1166 said:
... Also doesn't remember taking a Tylenol, etc...
Click to expand...

http://www.coping-with-epilepsy.com/forums/f23/pill-organizers-1988/

~~~

Robert, sometimes the best you can do is just let them know you love them and are there for them when they need you. Then give them some space.
 
My spouse has epilepsy. Although he tries to explain how it feels during, before and after a seizure, i know i can never fully understand because i haven't experienced it. After 3 yrs, he is still self-conscious about it, even though i am happy to support him in any way i can through it. he is constantly apologizing when he has any sort of tunnel vision/aura/seizure.

And gets EXTREMELY irritated when i remind him to take his meds at night.
Because of his meds, his memory is not the greatest. He often gets very bad anxiety that can affect our relationship, and some of his meds have sexual side effects, which we have to work through.

Any persons with epilpesy have any advice on what support you need most from your partner?
 
My partner isn't diagnosed with epilepsy, but we know he experiences seizures. His seizures really affect his moods, and he's in a med change right now, so his moods are worse than normal. I honestly don't know from one day to the next what I might experience -- one day he's okay cuddling, the next not, one day he's appreciative that I set the alarm for him to take meds, the next it annoys him *sigh* I have suggested vitamins, minerals, changing doctors, changing diet. Depending on how many and what kinds of seizures he has had that day he will either be receptive or not.

It's not easy Robert. Maybe it's best to talk to him and ask him what he needs from you, and tell him what you need from him.
 
we. Have talked a lot about it and most important is his health and not forgeting our love and desire to be with each other so we are going just day by day and enjoying as much aas poss when allowed I never have a bad day with my partner iam thankful for him regardless of his mood I know its not really him just side effects knowing that helps me a lot we are staying more postive and looking more for the good all around also helps us
 
hmmm, maybe I can find someone to love me, apparently others will put with the other me cuased bthy e episodes. It really is a challenge day to day lputting up with myself
 
You will matchu -- there's some wonderful artsy person out there who will appreciate and respect your talent and creativity.

Day-by-day is the only way to go. As one wise person once said to me, "If you have one leg on yesterday, and one leg on tomorrow, you're pissing on today!"
 
Robert & Erin, Sorry this is so long at the front end!
From the perspective of the person with E, I can offer the following, of course it is different for everyone, so may not help at all!

Since I was in otherwise perfect health and really enjoyed running and doing things that became a bit too dangerous to continue at first, or not ever again such as snorkeling and activities in really hot weather, when E showed up in my 30s it had a big impact on my emotional well being. I felt like a weakling, was embarassed and HATED when my partner wanted to talk about it and reminded me about meds, etc (because I was struggling with acceptance and I hated thinking about it) all the things I would do if the situation were reversed! Erin, I did the exact thing that you experienced..I would apologize profusely after a siezure or aura. Once when I was being carted off in an ambulance, when I could speak again all I did was apologize to the EMTs and my partner. I was so ashamed and humiliated. It may be that the apology may not be coming from him thinking that you want one, but because he feels embarrasment and feels you deserve one if that makes sense.

Over time, he understood that I typically wanted to be alone after seiz for a while,even though that was hard on him. And that I am angry at myself and embarrassed when I forget my med or to drink water frequently, etc.. As I have slowly accepted my new reality, our communication on this has been better and I finally really realize how hard this has been on my partner. I hate that more than anything now. We have a great relationship and this is not a problem any longer, just something we have to keep in mind just as if I had diabetis or anything else you have to manage and not let define you or your relationship.

If it is possible and fits ok into your relationship one thing that you can try is to get to the point where E is not the basis of a fear that has more impact on your life than you realize, it will make it easier on your partner to do the same. I know that is selfish and not right as this is not something that you have control over. I cant stress enough to just let them take the lead whenever you can and it is safe to do so, as hard and lonley as I can only imagine that can be right now.. might work out well. It might be a bit different than before, but it will get back to great sooner rather than later hopefully! All the best for you and your loved one.
 
Thanks ranger that's where me and my partner find our selfs now a little more open and things going back on track but I have backed off a lot so in all you were roght on que thanks for the help and hope
 
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