New and just finding out I have epilepsy

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Hi, My name is Alissa. I'm 26 and have a five year old little girl. I live in Memphis. I had grown up with seizures since I was 3 or 4 years old, but I was never told what causes them or how to handle them. I was always told I would over grow them, which I thought I had. I didn't have a seizures for five years, then when I was pragant with my daughter I had one. I hadn't had one until about a month ago. I was scared because I was having them back to back for several days. I finaaly went to the hospital, which my husband made me go. I had hoped them would of gone away again, but now that they haven't I'm scared even more than before. The day that my husband took me to the hospital, we were taking my daughter to school and she saw me having back to back in the car. I wasn't driving. She had to stay with my family for awhile, but when I got out she wouldn't talk or come around me for awhile. I finally sat down with her and asked what was wrong. She told me that she was scared that I was going to die. She and I talked about what had happen to me and that I'm going to fine now. I know that she's still scared because I'm scared myself. I'm trying to deal with it all, but I don't know what I can do to help me heal the pain I have inside and how to help the pain I'm causing my husband and daughter. I don't talk to my husband about anything that I'm feeling or thinking any more. I keep everything to myself and it's starting to cause problems in our relationship. I don't know how to let him know what I'm feeling or thinking. I'm scared that if I do, he won't understand and then tell me it's over because he can't handle it. What do I need to do?

Comments

Re: Re: Re: Re: Re: New and just finding out I have epilepsy

Submitted by alissahallmark on Wed, 2005-12-14 - 21:21

Hi HubbyHerb, I sat down with my husband last night for awhile and told that I was scared that he was going to leave me. He gave me a hug and whispered in my ear that he isn't going anywhere for a very long time because I told him about my seizures while we were dating. He even told me that he is scared. He explained that it did scare him watching me go through them and not knowing how to help me. He's always asking me how he can help me through this. He knows when I say "nothing or every things fine" that there is a problem and I need to talk about it. He doesn't push me, but he'll talk about what's bothering him about the seizures and Epilepsy, which usually gets me talking about my problems. He tells me that there is nothing we can't handle together. He's even told me he'll go with me if I need to talk to some one other than him or our families. He'll some times come in from work and give me a hug and say that it'll get better for us both. I tell him every day that he desevres some one better, but he tells me, he has found the love of his life and couldn't find anyone better. It makes me feel a whole lot better when he tells me that. I tell him that I have found the love of my life and he'll say that I can do awhole lot better. I'm glad that we can joke about with each other at a time like this. I wouldn't have it any other way and I know he wouldn't either. I'll start doing some of the other things you suggested. I need to let him in more than I am doing now. I'll keep in touch with you and let you know it every thing is going between my husband and me. Thank you for the suggestions and I'll put them to use. I would never have thought of any of them. Thank you again.

Re: Re: Re: Re: New and just finding out I have epilepsy

Submitted by alissahallmark on Wed, 2005-12-14 - 20:52

Hi Abubcari, thank you for what you wrote. Just reading it has helped me some.I'm sorry that you lost your job, some friends, and access to your children. I'm also sorry that your wife and you got a divorce. I can't even imagine how upset you must feel about all of it. I know that it will get better for, just as it will for me. When I was younger, I use to have absent seizures or that's what my mom and I were told at that time. I was having them at least six to seven times a week, but back then the doctor I went to didn't know what to call them. At first he thought my mom and I were just saying I was having seizures, but he fianlly learned other wise. He saw for himself that we weren't making them up. I had three or four just sitting in his office talking to him about what happens when I have one. He was scared to death that I was going to die right there, but then I came out of them and told him I needed to lay down and go to sleep. My seizures were sort of like passing out. I would lose sight in my right eye, then my right side would go numb, and I would kind of like pass out. I would stay that way for two to three minutes, then I would wake and be tired for the rest of the day. Normally after I had one, I would go home and go to bed for the rest of the day or I would sleep for two days straight. Once I slept for a week straight, that was only because I had had eight in a roll. I was scared when I finally woke up because I didn't remember having that many in one day. My mom was scared too. I always had my mom then, but now she has to take care of my baby sister(she's 14 years old). Which I know is her number one goal right now. I can still talk to her about what happen then and what I'm going through now. My seizures have some what the same now. I don't lose sight in my right eye all the time now, but every thing else is the same. The only reason I'm scared now is that I haven't had one in several years and that my daughter saw me having them one after another two days in a roll. I know I should of explained to her what was happening to me, but I couldn't talk for awhile after I had them. My mom had to explain to her what had happened to me. She try to tell that I wasn't going to die, but with her only being five, she couldn't understand it completely. My mom told me to talk to her about what was happening to me, which I did the day after I got out of the hosptial. My mom helped me tell her every thing that was wrong with me. If it wasn't for my mom and grandparents taking care of her while I was in the haospital, I don't think she would of been able to finally talk about her feelings and thoughts. I spend every day with her now. I'm on a medical leave from work until we get my seizures under control. I'm taking Dilantin, which is causing so many problems. I have to ask my husband now to check my pills to make sure I've taken the right amount for the day. I can'r remember things that people tell five minutes ago or the day before. I have problems with talking or saying what I'm trying to say. I have to have my husband with me all the time now, when he's not at work. I'm usually at home by myself every day, which is really scary for me because if I need any help there's no one here with me. I've told my doctor about the problems I'm having, but since I'm not working and can't pay for my doctor's visits, he wouldn't see or talk to me about the problems I'm having. I can't get a hold of my family doctor because he's out of town for a while. I've had my husband get on line to find the side effects for Dilantin, but the problems I'm having aren't on there. He did find that the memory lost is one side effect and so is having trouble talking. The real problem is it shouldn't be as bad as it is with both of them. Now I'm starting to having headaches every day and they last until I go to bed or take a nap. I'll sleep all day long until it's time to go get my daughter from school. I know I need to get up and work around the house, but I feel like every one is putting all the house work on my shoulders. I will get up some days and work until I feel like I'm going to pass out. It does help me put every thing aside and forget everything that has happened to me lately. I wish I could do that every day, but it would wear me out to the point I would become more depressed than I'm already. thank you for every thing you wrote in your letter. It has helped me put some thought into how I can help myself get on the right track to living with epilepsy. I hope every thing gets better for you and your family. Thank you again.