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Old 07-17-2005, 10:04 AM   #1
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thedrummersgirl HB User
HELPPPPP- VERY WORRIED about fiancee with epilepsy.

I'm so in love... but worried



My, now, fiancee and I started dating about a year ago. At the time, he couldn't drive... because he told me had a seizure due to an accident... involving him slamming his head into a wall... during a sports game. He told me it could happen to anyone- and couldn't have his license back for 6 months. He assured me he was fine- and that it was 'no big deal'. I recall asking him several times if he had seizures when he was a kid, or if he even had epilepsy. He always said no, and got irritated with me when i asked him.

About 4 weeks ago, he finally got his license back, and that's when the truth slowly started coming out. I learned that he used to have seizures a lot when he was a little kid, and had not had one in years- until 6 months ago during his sports accident. He told me he did have epilepsy.

I really love this man, and he's brought more happiness into my life, than anyone I can think of. Yet, he tells me he gets spells where his vision is blurred/or where he has a hard time speaking.. that last 10-15 mins each. And when I ask him questions, he gets short with me. Especially when I ask him if "he's feeling okay" or "if he's okay to drive". He seems to be more embarrased than irritated. I worry about these spells, and him driving. He's promised me that he can always tell if a "spell" is coming on-- and that he will be fine.

Why did it take him so long to tell me? I've assured him it doesn't bother me, and that I will always be very supportive of him. How do i tell him I want to learn about his disorder because I want to help him? I don't want him to feel embarrased about telling me.

Since this man is going to be in my life... Could this affect children? And will he live a long healthy life with me? Do people with epilepsy live just as long as people without epilepsy?

Is it normal for people with epilepsy to feel ashamed/embarrased about these episodes? I am just really confused, and want to know how I can help him.

Lastly.. although he has never had a seizure or "spell" in my presence, I am a bit clueless. If this were to ever happen in my presence, what do I do to help and/or comfort him?

*sigh*, any help would be appreciated!

I just need to know how to tell him.. "epilepsy does NOT bother me, but being in the dark about your epilepsy DOES bother me".

THANKYOU! Have a great day!

Last edited by thedrummersgirl; 07-17-2005 at 10:47 AM. Reason: typos

 
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Old 07-17-2005, 11:25 AM   #2
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neurowreck HB User
Re: my fiancee told me he has epilepsy.

If you love him, that's the most important part of the equation.... I know that I don't like people seeing me having seizures (and have warning "auras" so most of the time I can get away from others-- though now I'm home due to an increase of them).....The only reason I've told others was that I didn't want them freaking out if they saw a seizure (I get weird symptoms that look like I'm about to croak, then sleep like the dead for hours, with very shallow breathing, and ice cold skin....spooks people, so I do tell co-workers when I'm working, or those VERY CLOSE to me....but it's take me years to tell people, even if they're people I care about a great deal-- especially if I've been doing ok for a considerable length of time)

He is the one responsible for his disorder, and I imagine I'd get miffed if someone kept asking me if I was ok EVEN IF THEY HAD THE BEST INTENTIONS. Seizures are hard to live with because of the stigma...maybe you could make an agreement that IF he feels that he's not doing well HE will be the one to bring it up (unless something obviously unsafe is going on, and you need to get him medical help). Let him tell you when he needs you to get him help. If you stay together, and have children, you do not have to worry about it being a hereditary problem (very few sorts of seizures that are, and his sounds like "head-whack" epilepsy....ok, so that's not very formal, but it's also pretty common !!).

The more you look at his OTHER attributes, the less the seizures will seem so big a deal....he has epilepsy...he isn't epilepsy. That's not his whole defining "being"...and a lot of times, it can feel that way (to us with the disorder too, especially when things get a bit hairy for a while). I would venture to guess that there are others on the board that took a while to tell loved ones what their diagnosis was....it's hard to have the episodic loss of control over one's body (regardless of type, frequency, etc)...and to tell someone can be pretty scary-- especially if we're afraid of losing an important relationship because of the "secret" being out.....

Try not to focus on the epilepsy....get educated (lots of good sites), know how to help him IF he has a seizure (and ask him what will help him the most if he has a seizure)....the vast majority of the time, calling an ambulance isn't needed....just safety, reassurance, and rest.....

Hang in there-- and don't let a diagnosis take away from the rest of the relationship....love can get through a lot....

 
Old 07-17-2005, 05:37 PM   #3
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ibeeshell HB User
Re: my fiancee told me he has epilepsy.

Neurowreck is right, don't ask him all the time. It does get nerve wracking.

Most of the time I get very quiet, move my mouth weird and stare off during my seizures. Most people may not even know I am having one. But I do cry afterwards and am exhausted. I don't want to do that in front of just anyone. So he may feel a need to protect himself or even you from the situation.

As for driving, he should tell you if you need to drive. Your asking him may make it seem like you have no confidence in his abilities.

After I have a seizure, I am emotional and need to talk. My hubby was raised in a hush hush family. So I call my Mom for a good cry. So if your guy needs to talk about it, just listen.

And, that last statement you made about E not bothering you, but being in the dark does. Why not just simply say those exact words to him and leave it at that? Men like to mull things over for a bit. I bet he'll talk to you about it after a while.

Shelly

 
Old 07-17-2005, 10:38 PM   #4
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neurowreck HB User
Re: my fiancee told me he has epilepsy.

Maybe suggest he log on to this site, to get some more support???

 
Old 07-21-2005, 01:28 PM   #5
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Indy Girl HB User
Re: my fiancee told me he has epilepsy.

Hi - new to this Board today. I have been diagnosed with epilepsy since April 2004. It is very scary for loved ones because they have no control over what is going on with the person having the seizure. If you see him having a seizure, make sure he is comfortable and if possible lying down on his side. Just be there and watch him - nothing you can do for him medically anyway. When he comes out of the seizure, he may be very distraught and confused (like me). My husband just gives me a lot of TLC and reassurance until I start to feel like I can be "normal" again. It is a disease no one wants to have but it is beyond our control - those closest to us need to know we have epilepsy but don't treat us any differently than before because we are still the same! You post any time you have questions - I for one am happy to answer them if I can. Take care.

 
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