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epilepsy and its effect on loved ones

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Old 12-21-2004, 03:14 PM   #1
Join Date: Dec 2004
Posts: 9
kirren HB User
epilepsy and its effect on loved ones

My boyfriend is 27 years old and was recently diagnosed with Epilepsy. He was almost the perfect person to be with until he had a few consecutive grand mal seizures. The last 2 were as a result of negligence with meds and occasional alcohol intake. He has tried to commit suicide by overdosing on Dilantin because he felt that it wasn't worth living. His personality has changed. He has told me that he doesn't want to get married (after 7.5 years!!!) and that he would not be a good husband. He clearly stated that he wanted out of our relationship because he was no longer happy. He said that he was afraid to tell me for over 1 year about this. Meanwhile, he introduces me to his father who specifically came from out of town to meet me this past July. I had to break it up because I was starting to lose it! Ever since his last grand mal, he talks to me as if I were a stranger, as if he recalls nothing of our relationship and he has no hurt over it. He speaks very cold and I can't explain it, but he really has changed. We are talking about someone who loved me to the extreme. Everyone in his entourage can't believe it because they knew how he felt about me, and they knew how I felt about him. He has been through a lot. He has the twitching, the memory loss, the slurred speech, and the stares.
Can TLE change a person that much? I had to break it off because I couldn't understand why he was causing me so much pain with his words. I was thre to help him through it all. Maybe I was too much of a nag with his meds, or leaving him alone. I feel guilty just the same because I know this isn't really him, or is it? He has also bonded with a friend who I believe is now his "girlfriend". They have only known each other for 3 months. She understands him and does not pressure him, according to him. This was in the works during our rough time with his last grand mal. He basically rushed into this relationship like that. Her too, is on a rebound with her boyfriend and finds that he fills her needs because he is a great guy. He would like me to understand this and be his friend, because he cares about me and will do anything for me!!!
I can't handle this....and he doesn't understand why I can't handle the break-up...He use to call me once a week for stupidity and I have asked him to stop.

Is anyone going through this or is it just me!!!!!

This is someone with whom I was buying a house with next year. We were going to get married and have a great life together. All of this is in smoke and I am still in shock. It has been 2 months since our break up.
I feel that I can't handle this because I have too many unanswered questions.

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Old 12-23-2004, 05:55 PM   #2
Senior Veteran
Join Date: Feb 2003
Location: Jacksonville, AL USA
Posts: 997
siren1024 HB User
Re: epilepsy and its effect on loved ones

My father is epileptic since he was a teenager. He is well controlled with medication, and he refused to let his epilepsy impact his life. He's worked hard all his life and refuses to slow down at 55 years old. He believes he is just like anyone else, except that annoying seizure he has occasionally.

The most straining thing in our relationship and his relationship with my mom is the worry. He will often put off getting his dilantin refilled because he won't leave work to pick it up, and that's always when he has a seizure. He has huge sudden grand mals. The last few have involved pretty nasty falls and stitches. He manages a grocery store. Lots of hazards around! So needless to say, we are always asking him where he stands on his meds. He huffs and puffs and rolls his eyes like we're nagging most of the time, but that's what he gets for being irresponsible with his health! He'll snap at us that he's kept himself alive for 40 years. (though occasionally he has to sheepishly admit that he only has 2 pills left and "hasn't made it by the pharmacy yet") And any time he drives long distances we call him constantly to check on him and ask him a million times if he's had his medicine and he gets really short tempered and grouchy, but we're really just concerned.

Of course, he seems to be the opposite of your boyfriend. Your boyfriend is feeling like less of a person because he has a disability, but my father refuses to act like he has any sort of disability or needs extra care, attention, or concern for anyone. The situations are different, because my dad got epilepsy from a brain tumor and was lucky to be alive, seizures or no. But maybe you can share with him that so many people live such fulfilling lives once they get under control. My father has only had a handful of seizures since he got under control 30 years ago. Noone would ever have any idea he ever had anything "wrong" with him, because HE doesn't believe he has anything wrong with him that he can't deal with.

I think with an epileptic loved one, 50% of the relationship depends on the loved ones attitude towards their life with epilepsy. The other 50% depends on the way you treat them. Be educated about their condition, take seizures in stride (they are scary, no matter how many times you've seen one, you just have to get over it when it's over!) don't treat them like an invalid, but show concern too. In my father's words, epilepsy is only a big deal if you make it a big deal. That includes you and your boyfriend.

Right now I'm sure he just needs support and understanding. If he could accept his condition, that's 90% of the battle for both of you. I can understand why you ended things for now though. It's not your responsibility to make sure he has a good attitude towards life! Good luck! I know I don't live with epilepsy myself, but I've lived with an epileptic loved one for the last 24 years, so that's a bit of a different perspective!
Married 09/28/2002
DS born 07/05/2003
DD born 3/24/2005

Last edited by siren1024; 12-23-2004 at 05:57 PM.

Old 12-27-2004, 06:12 PM   #3
Jeff Jay
Join Date: May 2004
Location: Wisconsin
Posts: 9
Jeff Jay HB User
Re: epilepsy and its effect on loved ones

I've had epilepsy for about 10 years. It's never been controlled. I was married for 20 years. Three years ago my wife got tired of my seizures and other health problems and decided to kick me out and run off with my best friend from college. I don't blame her because I'm not controlled and it's a terrible thing to have her trying to take care of me in clusters of compex partials. She was on a first name basis with the ER personel.
Memory can be effected be the epilepsy or the meds. So can the personality. I'm living with my parents and I was told not to talk to my father like something one day. I don't even know what I said! You can read about the AEDs but if someone takes more than one the reactions on memory and personality I think can be different.
I think he needs to get used to the idea of having epilepsy and the meds and he will.

Old 12-28-2004, 09:12 AM   #4
Join Date: Dec 2004
Posts: 9
kirren HB User
Re: epilepsy and its effect on loved ones

I really do wnat to get back to him. I love him and I know that this is not like himself. I just don't know what to do.

Old 12-28-2004, 10:01 AM   #5
Junior Member
Join Date: Feb 2004
Posts: 38
namrata89067 HB User
Re: epilepsy and its effect on loved ones

Hey friend...dont worry...i am an epileptic too...i too feel i shud give up my realtionship with my bf coz i dont want him to suffer coz of me. Maybe urs feeels the same. Tell him u care about him and that is y u nag him about his medication. After all, only people who really care nag u so that u get better...My mom does it to me too...but iknow she does it coz she cares. U tell hi mthat i am sure he'l lunderstand. Tell him that no matter wat happens u really love him lots and at least for some time let him have his own way...Gradually start telling him the importance of his to his doc and tell him to explain the importance of his mdeicines...And trust me if this 3rd person whom he claims to like is really not the rite sort of a person for him, things wont work out between them...He'd realize ur importance...
Write in and let me know what happ.

Old 12-29-2004, 07:22 AM   #6
Join Date: Dec 2004
Posts: 9
kirren HB User
Re: epilepsy and its effect on loved ones

Thanks for the advice, however, I've already asked him not to call me because it's just to painful. I guess he doesn't understand why I feel like this because he hasn't taken the time to grieve our relationship because he is so busy with his new flame. I was told by his family that he has a Xmas gift for me , but I haven't received it yet. I feel guilty and confused, because I'm not clear as to whether it's his illness or is it him. Thanks for the interest..I will keep you posted

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