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: New and just finding out I have epilepsy

Submitted by CG on Tue, 2005-12-13 - 20:10

Hi Alissa: I've been living with epilepsy since I was 5 yeasrs old. I think that by opening up to us online, you have already started to help yourself. I used to be really frightened letting anyone in, especially men, in case they saw me have a seizure. My boyfriends were great about it - very supportive. When I met my husband, and I told him about it, he was really supportive of me. He got online, searched for articles about what I had, questioned my parents, my doctor, and now he reminds me about taking my medication, getting enough sleep, not getting stressed out. Talk to your husband. Tell him that you are scared, and that you know he must be scared as well. Tell him that you need him and love him, share your feelings with him. You may need medication, but if you had a heart condition, you would need to take medication, and both of you might be scared, as well. Talk to someone you trust about your condition, like your minister. Some are very open-minded and compassionate. Or talk to a doctor. Your husband loved you enough to take you to the hospital, let him in on how you are feeling, let him tell you what he is feeling. Talk to your family. Let them know. And keep in touch with the group here. There is a lot of good advice and caring on this site.

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

Submitted by alissahallmark on Tue, 2005-12-13 - 22:04

Thank you CG, I try to talk to my husband about it, but his mother use to be a nurse. Everything we try to discuss personaly (we're staying with his mother for awhile), she'll butt in and tell us that that isn't true or your doctor told you all wrong. I can't just talk to him in our room alone without her finding out what is said between just him and me. Niether one of us are telling her what we've said to each other because it's none of her business. When I was in the hospital, my husband was right there with me almost the whole time. He heard pretty much every thing the doctor told me. One thing that the doctor had said has us both scared because my front right lobe is enlarged. My husband has gotten on the internet and look info on that for us to understand better together. When his mother heard about it, she told him it was nothing to worry about because I'll run with anything the doctor or someone else tells me. Tonight I told her, I found a website that I think will help me not to as scared as I am. She told me not to beleive anything that is said on this site because there are no doctors on here to tell me what is true and what is false. I'm actually learning more about epilepsy on here than any where else. I've read alot of the forums and can relate to a lot of them. Which I've never been able to do with groups or just talking one on one with my doctor. I want my husband to read some of the forums for himself. I think it will help us deal with some of our problems. I am on medication for the first time. The doctor at the hospital put me on Dilantin, which is causing me a lot of problems. I'm forget a lot of things that I should know, but can't remember. I have problems talking, can't sleep, and headaches all the time. I do talk to my husband about all of them. Sometimes he catches them before I do and askes if he needs to take me to the hospital or do I need to talk about them. I have been depressed since I've been on this medication. I try to talk to him about what I'm feeling or thinking, but every time I do I hear his mother telling him not to believe every thing I say. I don't know what to do about that problem because it's causing us more problems than before. If you have any ideas please let me know. Thank you for writing to me. I hope we can talk again soon. Alissa

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

Submitted by abubcari on Wed, 2005-12-14 - 17:56

Hi Alissa, I read your story and felt compassionate to contribute to the topic you raised regarding the problems you face because of your newly diagnosed epilepsy. First of all, please do cheer-up and know that you're not alone, then take things easy, I know exactly how you feel. I think the best way to encourage you is to relate a little bit of my life with epilepsy to you, then you can get an idea of what/how traveling the road of epileptic condition could possibly be like. I was only medically diagnosed with temporal lobe epilepsy just about 3-years ago, initially it began with what they call absent seizures or complex partial seizures, which gradually developed to include grand-mal seizures. I suffered a lot of prejudice from all directions, I lost my job, some friendships and even got divorced by my wife. I had no access to my own children for fear of causing injuries to them, during seizures. As if that wasn't enough - when I learned a bit about managing my epilepsy and, tried to pick myself up - it appeared like every door was closed where ever I turned to look for some assistance. You can imagine what potential damage that could cause to someone with a brain haemorhage like myself - massive, massive stress - exactly the wrong antidote for this condition! At some point I felt so hopeless that I thought about taking my own life but, I was so scared to death, of DEATH! There's so much to my life experience with epilepsy that I can't possibly say all at once, so I will concentrate on something to empower you, for now. It's essential that you come to the understanding that inspite of the increase of knowledge/education and civilization many more people are ignorant and so naive about simple things in life, that is nature! Though it may sound funny but, it's workable if you can begin to consider your present condition as an enlightenment into a new world. Where you can help yourself much better than what anyone else could contribute to, towards your well-being - please this is not to suggest that you should refuse the support and assistance of others. It just means that 'in your own hands, lies your destiny' and you'll get whatever you wish for and are determine to work it. Do not take the negative responses from families and relatives that serious, it's their lack of knowledge that causes them to react this way. As time goes by things will gradually improve, if a particular medication causes you discomfort, quickly raise that with your doctor, as most of these medicines have lots of side effects. If you watch your life style and diet carefully you might be able to discover some helpful hints here that can cut down the frequency of seizures or even possibly stop them completely. For me, I suffered a serious effect from an overdose of epilim chrono by my doctor, unintentional though, that put me off all epilepsy medicines. Taking my life into my own hands with persistence, and continuous research into alternative remedies, diets, and through try and errors I discovered for myself what's helpful to keep and, what's not helpful, so I can avoid. I think it's so much for you to take in at the moment, that it's not an easy road initially, but one that's conquerable with determination. To be able to achieve this, love for self and care for your loved ones is essential and a major drive. Focus more on the positive things that strenghtens you, to keep hope alive and pay less attention to those whose lack of knowledge in life have developed improper attitudes towards others. To me, uncultured behaviour parterns towards people in different circumstances, I perceive it to be a medical condition that's yet undiagnosed! I hope that you will get a little upliftment after reading this, I am not in a very good mood today, so hopefully if this is not too bad then I may be of help later/soon. Take care and worry less, to reduce stress, for things can only get better when they're already worst.