Thankful for all the support and knowledge of everyone here

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hi there... new to the forum, and just want to say thanks to everyone here. i have learned so much just by surfing this site and reading all of your comments, questions, issues and concerns. if anyone's interested, here is our story: my 18 y/o daughter was recently diagnosed with epilepsy due to multiple seizures. she had febrile seizures when she was an infant, but grew out of them at around age 4. had a random grand mal when she was 12. we didn't think a whole lot about it - we thought it was brought on by dehydration. then this past march, things got crazy. she had a grand mal in march, another in april. she was put on vimpat, then oxtellar was added to the mix. then went away to college for the summer and had 3 more seizures in 14 days. unfortunately, in 4 of the 5 cases, she hit her head from falling and had to go to ER for cat scans. another unfortunate issue - had to withdraw her from school. our neurologist said the vimpat/oxtellar combo wasn't working - which was good, because she had some nasty side effects. oxtellar was giving her double vision 2 hours per day and the vimpat in the morning was causing some tingling around her mouth. and there was a little weight gain during this timeframe, as well. neurologist referred us to a seizure specialist. after our 2-hour appointment, they said she probably had IGE (idiopathic generalized epilepsy), and vimpat and oxtellar weren't necessarily proper meds for that diagnosis. so now we're on keppra and weaning off of the other two (as of today, we're completely off of oxtellar and have one week left of vimpat). no seizures since 7/4. hoping that continues, and the keppra is in fact the best med for her condition. she is presently enrolled at the same school in the fall, and leaves in 2 weeks. fingers crossed. thanks for listening. this disease really is a crazy roller coaster, and i turn to this site quite often for support and guidance. it's comforting to know there are so many others on the same journey...

Comments

Welcome to the site It is a

Submitted by just_joe on Thu, 2014-08-07 - 15:25

Welcome to the site It is a way to get more information on something your daughter is having to live and deal with. As for medications Keppra is the best medication I have used in the 50+ years I have been livinf and dealing with epilepsy. I have several different types of epilepsy and that means different types of seizures. I have been blessed to not have a convulsive seizure since 1970. But I still have seizures. I have been on keppra or it's generic for about 10-12 years now. It not only reduced the number of seizures I was having. It also shortened the time in those seizures and time to focus (get back to normal). Seizures which lasted 2-5 minutes now last 2-5 seconds. The focus time used to be 15-45 minutes now lastes 8-10 seconds and in some cases up to a minute. Most people used to know I was having problems. Now I can have a seizure while in a conversation around people and they would know nothing about it. If she is to take meds 2 times a day those times should be 12 hours apart. I take mine at 8 am and pm. If she takes hers a 7 am and 10 pm that 3 hour delay can cause breakthru seizures. I know since I have been doing it for years and I questioned Doc on it. As for a crazy rollercoaster it can get scary at times and yes there are bumps in the road. People just have to take the dips and turns as them come thru the ride. Take things as they come along. Live in the rpesent but look and hope for a future I hope she does well in college. Oh and have her check with the administration since most colleges have people who are to help people with epilepsy and other handicaps. It could give her some advantage in getting courses set since she will have that person working with her. She also needs to sleep well but also have her school work finishes. I also went to college but back then I did it all and yes it was difficult. Keep her stress down since for many people stress is a trigger. I knew I would have to take time getting thru so I took a few courses at a time. Working 40 hr week and college ain't easy but it can be done. Over a month without a seizure is a start. At the current time I have a partial seizure every 8-14 days, But like I posted most people would not know anything about them. I do hope she stays seizure free and hope her college goes well

Welcome to the site It is a way to get more information on something your daughter is having to live and deal with. As for medications Keppra is the best medication I have used in the 50+ years I have been livinf and dealing with epilepsy. I have several different types of epilepsy and that means different types of seizures. I have been blessed to not have a convulsive seizure since 1970. But I still have seizures. I have been on keppra or it's generic for about 10-12 years now. It not only reduced the number of seizures I was having. It also shortened the time in those seizures and time to focus (get back to normal).  Seizures which lasted 2-5 minutes now last 2-5 seconds. The focus time used to be 15-45 minutes now lastes 8-10 seconds and in some cases up to a minute. Most people used to know I was having problems. Now I can have a seizure while in a conversation around people and they would know nothing about it. If she is to take meds 2 times a day those times should be 12 hours apart. I take mine at 8 am and pm. If she takes hers a 7 am and 10 pm  that 3 hour delay can cause breakthru seizures. I know since I have been doing it for years and I questioned Doc on it. As for a crazy rollercoaster it can get scary at times and yes there are bumps in the road. People just have to take the dips and turns as them come thru the ride. Take things as they come along. Live in the rpesent but look and hope for a future I hope she does well in college. Oh and have her check with the administration since most colleges have people who are to help people with epilepsy and other handicaps. It could give her some advantage in getting courses set since she will have that person working with her. She also needs to sleep well but also have her school work finishes. I also went to college but back then I did it all and yes it was difficult. Keep her stress down since for many people stress is a trigger. I knew I would have to take time getting thru so I took a few courses at a time. Working 40 hr week and college ain't easy but it can be done. Over a month without a seizure is a start. At the current time I have a partial seizure every 8-14 days, But like I posted most people would not know anything about them. I do hope she stays seizure free and hope her college goes well

Welcome to the site It is a way to get more information on something your daughter is having to live and deal with. As for medications Keppra is the best medication I have used in the 50+ years I have been livinf and dealing with epilepsy. I have several different types of epilepsy and that means different types of seizures. I have been blessed to not have a convulsive seizure since 1970. But I still have seizures. I have been on keppra or it's generic for about 10-12 years now. It not only reduced the number of seizures I was having. It also shortened the time in those seizures and time to focus (get back to normal). Seizures which lasted 2-5 minutes now last 2-5 seconds. The focus time used to be 15-45 minutes now lastes 8-10 seconds and in some cases up to a minute. Most people used to know I was having problems. Now I can have a seizure while in a conversation around people and they would know nothing about it. If she is to take meds 2 times a day those times should be 12 hours apart. I take mine at 8 am and pm. If she takes hers a 7 am and 10 pm that 3 hour delay can cause breakthru seizures. I know since I have been doing it for years and I questioned Doc on it. As for a crazy rollercoaster it can get scary at times and yes there are bumps in the road. People just have to take the dips and turns as them come thru the ride. Take things as they come along. Live in the rpesent but look and hope for a future I hope she does well in college. Oh and have her check with the administration since most colleges have people who are to help people with epilepsy and other handicaps. It could give her some advantage in getting courses set since she will have that person working with her. She also needs to sleep well but also have her school work finishes. I also went to college but back then I did it all and yes it was difficult. Keep her stress down since for many people stress is a trigger. I knew I would have to take time getting thru so I took a few courses at a time. Working 40 hr week and college ain't easy but it can be done. Over a month without a seizure is a start. At the current time I have a partial seizure every 8-14 days, But like I posted most people would not know anything about them. I do hope she stays seizure free and hope her college goes well

Thankful for all the support and knowledge of everyone here

Comments

Welcome to the site It is a

Submitted by just_joe on Thu, 2014-08-07 - 15:25

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