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My sister has epilepsy.

Tue, 04/04/2006 - 20:19
i guess i'll start first with my story... im 21 and my 17 year old sister had her first seizure (grand mal) this past christmas. we were all sitting around opening presents and all the sudden, she threw herself forward and started making a deep guteral noise. i thought at first that she was choking, but quickly realized it was a seizure. she had never had one before so we were all very frightened. an ambulance took her to the hospital where they ran just about every test imaginable. they started her on dilatin (through an iv)and her blood pressure began to drop dramatically. when this happened they decided to admit her and watch her overnight. her blood pressure went up a little bit the next day, but not as high as they would have liked it to. they decided to release her anyways and gave her dilatin to take at home. two days later we met with a nuerologist and he explained to us that everyone is "allowed" one seizure in their life. he also told us that typically if someone has epilepsy they will have their second seizure within 3 months. he would do an eeg and if the results came back normal, she would be slowly taken off of the dilatin. eeg came back normal, so we weened her off the meds. march 25th came around and we were sooooo happy. she had been seizure free for 3 months!! two days later, i get a call from my mom saying that courtney had just had a seizure at school (grand mal again) and that she was on the way to the hospital. i honestly could not believe it. technically... this was the 90th day exactly! this time, she hurt herself too. she feel into her neighbors desk very hard and ended up with a black eye. they started her on the dilantin again and this time she had a very strong reaction to it. the doctors were not in the room right at the moment we noticed her acting funny, but she looked like she was stretching (but not in a normal way) and she started talking and not making any sense at all and then she began throwing up as her blood pressure was dropping!! i have no idea if that is a seizure? anyways they stopped the dilantin immediatly and admitted her to the hospital again keeping her over night. she met with the nuerologist again today and he is starting her on another medication (something with an L) because he said that dilantin can have extreme side effects and he doesnt like how she was responding to it. i decided to join this site because i really feel like i need to talk to people about this and my family just isnt cutting it. i tend to over dramatize things, so i am honestly freaking out about this. as i am writing this, im fighting off tears because i am so concerned for whats to come with her. i feel so sad that my little sister has this happening to her. she does have a learning disorder and did have a traumatic birth which i have read is very common with people with epilepsy. she was supposed to get her license this july but the doctor said she cant for at least another 6 months. i think and worry about her all day and even make her sleep in my bed with me because i want to be with her if it happens again. whenever she's in another room, i call out to her every once in a while to make sure she is coherent. my parents arent even taking this as bad as i am. i guess what im hoping to gain from this site is some people to ease my fears. sorry this was sooo long. i just have a lot on my mind.

Comments

Re: My sister has epilepsy.

Submitted by angel_lts on Wed, 2006-04-05 - 08:06
I am so sorry. As I read you last few lines, I even was fighting back tears. I have epilepsy for a long time. I have a sister and a niece who have it too. I have a daughter who does what you do, call out to me once in a while. Or she feels she has to watch me all the time. When my husband is away, she wants to sleep with me. I will not let her. I dont want to put that all on her. She worries all the time about me too. It is not easy to deal with, especially at a young age. And parents can be confused and dont want to admit your sister has a problem. For they are very scared I'm sure. They just show it in a different way. You are very strong to even come forward like you have done. This is the smartest thing to do, seeking help, and support. It will help you get through this hard time. The medication they started her on is probably Lamictal. The side effect that happened to me was insomnia. I was up all hours of the night. I had to get off of it, because it was causing more seizures because the lack of sleep. Sometimes even when the EEG comes up normal. The problem can be deep within the brain that it does not pick it up. Things that can cause seizures, lack of sleep, bad diet, MSG, aspartame, stress, time of the month(before, during and after). See when the seizures occur. Make sure she has a calendar of when she had seizures, when menstrual cycle started and ended. And any meds she is taking. It would be good if she gets a journal too. Prayers to you and your family Lisa

Re: Re: My sister has epilepsy.

Submitted by brittykity143 on Thu, 2006-04-13 - 15:46
Lisa, The medication they started Court on was Dilantin and now she is taking Lamictal. Sometimes I catch her "spacing out" and I'll say something to her, she'll ignore me, and then I'll repeat it and she will respond with "what?" Like nothing has happened. Am I being paranoid? Do you realize when you've had a seizure? I would not put it past my sister to not admit to having it. I can tell she is scared and oddly enough ((to me at least)) embarassed around not just friends but family. Yesterday, she left school early because she said she was having trouble reading. She said the words were very blurry and she was afraid she was going to have another one at school. She didnt end up having one but she fell asleep almost as soon as she got home. Thanks for your help! I want to learn whatever I can about this and help her!! 33 Britt

Re: Re: Re: My sister has epilepsy.

Submitted by angel_lts on Thu, 2006-04-13 - 17:02
Brittney, Yes I do realize that I had a seizure. But of course everyone is different. And her words being blurry, most likely it is from her medication I am sure. Have had that in the past many times. That can also happen when you dont get enough sleep. take care Lisa http://health.groups.yahoo.com/group/epilepsyapproach/

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