Intro: Hello, I am Sue from California. My... - Epilepsy Action

Epilepsy Action

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Intro

SusieIM
SusieIM

Hello,

I am Sue from California. My adult daughter who lives with me has sezuires. It has been five years of on and off with sezuires. Last year has improved for her a lot, but because of all the past sezuires, has affected her of course. Thought I would join this group, for insight, continued understanding on how to best help her.

9 Replies

Hi Sue, My adult son lives with me and is 26 and has seizures too. Luckily, we are finally on a medicine that is helping. We are in NJ. I am swap information. We have been at this for 13 years.

Maureen.

SusieIM
SusieIM in reply to Comedy

Thank you for responding! My daughter had not always taken care of herself, is better about it now. To complicate things I have had health issues as well. I have been on chemo last few years of course it slows me down, can still function. I am trying to be a support for my daughter, at times it is hard.

Just be with her always encourage to do what she likes to do... I was diagnosed since I was 11 years old, now at 52 I can say I have an almost normal life style.. but my mom was always there, making sure I took my pills and mostly making sure to sleep well.

SusieIM
SusieIM in reply to Carlos68

Thank you Carlos68. I have tried to be there for her. Your words mean alot because it is a encouragement to continue to do so. I am trying to encourage her to develop more independence, yet she does need someone to be around.

Carlos68
Carlos68 in reply to SusieIM

Yeah, I know the feeling. Maybe because my first doctor was not a neurologist, she was GP, ( in Mexico)she was so straightforward with my epilepsy.. she said that I will have the seizures forever, that I have to deal with it.. it made me so angry that I wanted to do things I couldn’t do at that time because my seizures were very often..my mom didn’t wanted to get hurt, so she didn’t want me to work , that really scared me, because I got thinking what I am going to do when she’s not here, so I decided to be kind of rebellious, I worked in places that were so hard for me a lot of labor work just to let them know that I was fine and that Ca I could do something.. sometimes we need just that little push..

SusieIM
SusieIM in reply to Carlos68

Your sharing your experience, helps me to understand my daughter more. How she feels at times is very normal. She at times gets frustrated because she can't remember parts of her past, then sometimes she talks like she can relate to the past more than the present but I think that is because---she does not have alot going on right now. She is doing better tho, I am so glad. She has lost some of her confidence, is starting to get it back. The more she sees she can do, the more she feels she has accomplished. I will continue to encourage her. Take care, thank you for introducing yourself.

Join the gang, they are a good lot here! I have had JME epilepsy over fifty years, that's a lot of seizures! Seemingly not too bad now had 1 seizure since change of medication in April 2018, I am on Vimpat and Briviact!

Yes Adlon57, thats alot of sezuires; my daughter used to have several a day, some were scary, took a while to find the right meds, sometimes she refused to take meds, made condition worse of course. This is in the past, a year and a half ago, it got so bad she spent some time in the ICU, they and I were afraid for her; after that, they put her on Vimpat, which has helped alot. These days she usually has very few, unless she gets very stressed then it can bring it on. But wow, youv'e had them for over 50 years, she's had them for 7 years, she is almost 26; it's been a very long 7 years. Anyway, thank you for your welcome!

Adlon57
Adlon57 in reply to SusieIM

Yes stress was a major cause of most of my seizures, I'm an evening/night person even now I try to get most of any appointments in the afternoon. Family and friends who know you have epilepsy are priceless a real comfort! There are a wide range of medications, I have tried most for my particular type of epilepsy, ironic I suggested the mixture I'm on now to my epilepsy specialist!

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