Dating someone with epilepsy - do you have advice for me?

[AW1220]

Hello, everyone!
I have been dating my boyfriend for about 6 months. He told me before our first actual date that he lives with epilepsy. This morning at 5am I woke up to him having a nocturnal grand mal seizure. This was my first time witnessing it. It startled me at first since it woke me from a sound sleep, but once I realized what was happening, I stayed calm and moved stuff away from him. I let him finish and once he came to I tried my best to show him it was OK and that I accepted it as a normal thing in an attempt to lessen his embarrassment as much as possible. (He had recently told me having a seizure in front of me is something he "never wants to do to" me.)
I started researching all over the Internet to find more information so I can be the best supporter I can be for him. I was hoping that any of you would be kind enough to give me some advice about how to be a great supporter to him. What is something you think I absolutely need to know? If you live with epilepsy, what would you appreciate or need from your supporter? If you are a supporter, what do you do to help your loved one?
I appreciate any advice you can offer me.

 

[masterjen]

The first thing is to encourage your boyfriend to be more open with you, and have him tell you what he would like you to do during and after a seizure. It sounds like what you did do was just fine, but there may be more specific things that help him. It is sometimes helpful to the physician that a "witness" (in this case you) immediately write down what you observed before, during and after the seizure as well as how long it lasted so the neurologist can keep track of whether seizures are changing.

 

[Bernard]

Hi AW, welcome to the forum. :hello:

It's always awesome when someone cares enough about a partner to seek out a forum like CWE and ask these kinds of questions.

My wife has epilepsy. She has always been very open and honest about her epilepsy - she told me about it when we first met (before either of us even thought about dating). It was many months down the road before I really started to get a full appreciation for what it meant.

You might find this old thread interesting: http://www.coping-with-epilepsy.com...sy-sometimes-support-needs-support-too-15011/

 

[Belinda5000]

when I was dating I had know problem at all.I w as very open about my epilepsy and the people;
I dated didn't have a problem and I told them what to do if I had a seizure.

I met my dh Dennis through EFA and he also has epilepsy.

 

[AW1220]

Thank you everyone, this is very helpful.
The seizure just happened yesterday morning and he is definitely embarrassed by it as he keep apologizing to me and saying how badly he feels. I'm doing my best to reassure him that it's OK and that it didn't change how I feel about him. I'm hoping he will be OK with what happened soon. .. I have my own issues that he doesn't mind so I keep trying to remind him how we will be there for each other so he can go back to feeling like a protector and not like someone who needs to be protected. He wants to live with me eventually so it's likely something I would have eventually seen. This is the first seizure he has had since we started dating so I think we just did too much in one day for him to handle.

 

[masterjen]

It is embarrassing and/or unsettling to have someone observe a seizure. They your body do something you cannot control. I've felt this way even when even my mom has observed a seizure and we are very close, so never think that your boyfriend is questioning your relationship if it happens he wants to take a break from some aspects of your relationship. Be there to support him, and to give him room when he needs it.

 

[Nakamova]

It's great that you are supporting and reassuring your boyfriend and making the effort to get informed about epilepsy. Tonic-clonic seizures can be very hard on the brain and body — even the aftermath of a mild one can feel like being very hungover — so you may want to wait before having any involved conversations with your bf. One thing to look out for is being overprotective or too focused on epilepsy. You and your boyfriend will need to figure out what works for both of you, and having open and matter-of-fact discussions (when the time is right) should help.

 

[Fedup]

AW1220

Welcome to CWE, it was very honest of your boyfriend to tell you about his epilepsy from the start and it shows the person you are to stay by him and find out more. :clap: I cannot blame him for being embarrassed, I had the same problem when I first meet my wife, who like you has stayed by my side and even though I do not say it enough I cannot find the words to say THANK YOU properly, so trust me when I say your boyfriend feels the same.

Its not having the seizure in front of you that is the problem as much as you seeing that he has no control what so ever, he feels horrible after a seizure, maybe a little cranky but he tries to hold some of it in so you do not see it all or so he thinks and this is part of the reason he feels so embarrassed, only part mind you. So you see it is not really a question about you accepting him having epilepsy. Talk to him about it, ask him how he feels and tell him how you feel, you already meet Bernard who founded this site with his wife Stacy, there are others here, with good advice.

You must have got quite a fright when you realised what was happening, you did everything right and more than your best. When I come out of a seizure there is no point in you trying to talk to me, oh I will do my best answer my wife and be nice but I honestly have no idea, my brain is fried, so to speak. It takes awhile for me to fully come too and your boyfriend may be the same.

The best research you can do is taking to him about this and what he needs and wants, then to explain (not tell him) that you will support him and the seizure does not matter.

You picked a very good place to come and research, the people here will offer you all the help they can and answer your questions.

Thank you for being one of those who gives support.

 

[seagull]

AW you doing good..IT not nice see one for first time..i know how bf feel it awful when people see it but people often not as bad us with e feel ,like think so anyway.MY horror is peeing and he may feel same many of us do.
I sleep when I come out often thumping head ache as fedup says fried brain.
I don't think you can do anymore than you are it great you like you are.
Maybe talk to him but he may not want talk about it some of us don't as proberly had it rough when younger..Nobody in my family give rats arse how I feel so never really talked about it.Only time I do is in this forum with like minded people so stay with us

 

[AW1220]

I appreciate everything you all are giving me. We talked a bit about it today, but we didn't have much time so I think we may have to dive into it again another day. I don't want to rush him on it. He did mention the looks he had from other people seeing it, but we didn't get too far in the conversation since he was on his lunch break... maybe having me to talk to about it will eventually help him. Thank you again, everyone!

 

[Belinda5000]

When dating some with E don't continually ask if there ok and treat them like you'd treat anyone else.If that person has a seizure don't panick know matter what kind of sz it is that is the worst thing you can do.:soap::twocents:

 

[seagull]

Belinha so right.
Afraid we only a generation on since we were all treated as if insane or worse time will change with education but advice don't push it to much at present

 

[AlohaBird]

Yes, it is a fine line to walk in between wanting to be helpful yet not wanting to hover and be smothering.

I have had relationship issues before (back when my seizures were new and I wasn't really able to articulate what I was feeling to anyone). People who don't have epilepsy are often very kind and considerate when the actual seizure is happening but don't realize how long the after-effects can last.

Sometimes for a good 24-48 hours after, I feel a bit sluggish and mentally spaced out. I often prefer to wait this out on my own so don't be reluctant to "give him his space". Also don't take it personally if he forgets things or doesn't feel much like talking after a seizure. Between the brain fog and a sore tongue, conversation can be "just too much" to deal with right then. Give it some time and he'll be back.

 

[seagull]

Pounding head ache I just not talk to people impossible and if people pursue it I throw up.when I first had e I got slung into mental hospital full s had not manifested at that point certainly did after they put me on drugs for serious mental illness,I chucked them all down loo in the end and got referred to doc who knew a bit more

 

[seagull]

Oh alga bird bird I got magnesium is it meant give you the runs

(I going throw this iPad at wall if it cocks spelling up again I did spell name right iPad don't) n

 

[AlohaBird]

Pounding head ache I just not talk to people impossible and if people pursue it I throw up.when I first had e I got slung into mental hospital full s had not manifested at that point certainly did after they put me on drugs for serious mental illness,I chucked them all down loo in the end and got referred to doc who knew a bit more

Seagull makes a good point that mental/emotional issues and epilepsy often go hand in hand.

But it is difficult for both the patient and the caregiver to know how much of what is happening is caused by the meds (some can give you 'anger management' issues and some can make you depressed and even suicidal) and how much of what is happening is due to the feeling of "Holy Crap! I have epilepsy and my tongue hurts and my head feels like somebody took out my brains and put oatmeal in" and how much of it might have already been there before the seizures.

After someone has been on meds for a long time, it can be even harder to untangle this.

Oh aloha bird bird I got magnesium is it meant give you the runs

Not if you take the right kind. This thread has a lot of good info on Magnesium. http://www.coping-with-epilepsy.com/forums/f23/revisiting-magnesium-25241/

 

[seagull]

I did not know this with magnesium.i know bottle stuff and Epsom salts is magnesium and excuse pun but it taste like crap.i got mine in pill form from natural remedy area and it don't mention having trots on it...

aw I sitting next to guy in shopping centre and he turn to me said please don't send me to hospital next thing he unconscious and sz everyone was panicking I said leave him wait for his wife I said wait 10 mins he come round but I was over ruled by everyone..I said he won't thank you if he comes round in hospital again over ruled so I walked off ambulance came he come round by then laid down in ambulance 5mins then walked home with his wife.
Poor man was mortified.It sad in this day and age people still feel like that.Alexanda was thought of as near God bc of e as was Julius Caesar ,I wonder what happened in history that stopped bc I could take bit of worshipping as I feel bit of godlike today and no it not e or mental as me and iPad had a few words and miriicle apart from spell checker grammar and translated speed we may be getting somewhere but not sure where.
I say all this crap because you and him got keep sense of humour��

 

[Hunter Dave]

GOD BLESS You for having the Heart that you have and not Rejecting him , because many would . Just show him that you accept him and his epilepsy and learn all you can about HIS situation , what triggers them (huge) , make him avoid stress (big one ) and not to forget his meds , the fact that he has you is most important to his health to .
Thank you for being who you are .

 

[acshuman]

Understanding Boyfriend of Girlfriend

aw1220,
One of the best things that you can do for you boyfriend is to learn about E. Another thing to be careful of is asking too many questions too quickly. Your getting to know about his condition is something that can't be rushed! Just talk about his E when he wants to talk, and keep your questions simple. When he feels comfortable telling you everything about his E, be ready to listen and soak up all of what he says. Your remembering these things could be very important for both of you in building a strong feeling of trust!
Don't expect everything that you learn in research to apply to your BF's case. Each case is different, just like every person is different. There may be some things are similar, but that is NOT going to be the case with everything!
Don't expect your BF to be able to tell you everything about what happens during his seizures. This is because he may NOT be fully aware of what he does, and may feel bad for NOT being able to tell you these things.
I have been diagnosed with E for 50 years now, and I am still learning new things about E every day. This means that there will always be new facts to find and learn!

ACsHuman

 

[AW1220]

Thank you every one for you input, I really appreciate it. He's talked to me a little but about it, but I'm trying to to pry or rush. I keep what you all tell me in mind, so thank you!!