Helping Family Members with Seizures

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Hi my name is Kate and my sister was recently diagnosed with partial seizures that spread. She has been dealing with this since March, and even though she is on medication, she is still having symptoms and not feeling better yet. She is very frustrated, and I feel helpless that I can't make her feel better and that her life has changed so much and we still don't have answers to why this is happening. I have become very overprotective of her, and I get worried when she does things on her own. What would be the best way I can support her? There doesn't seem to be any epilepsy support groups in my area, and I just want to support her the best way I can. Any feedback would be appreciated. Thanks

Comments

Hi KateFrom what you posted

Submitted by Anonymous on Sun, 2014-08-10 - 21:08

Hi KateFrom what you posted she has been having seizures for about 5 months. She is taking medications. Ok has she had a reduction in the number of seizures she was having? When was the last dosage change? What medication is she on? Dose she take meds 2 times a day? All of these questions are important. If she was eased onto medications the neurologist generally wants the person taking them for a short while then the dosage can be raised or lowered. Medications and dosages are tricky at times. A medication that works for one person may not for the next and dosages are just like that. I have always been on high dosages and I have see posts in here that their seizures are being reducaed and controlled with the same medication I take only their dosage is less then 1/3 of mine. If the number of her seizures has been reduced then the medication is working and adjustments need to be made. If she takes meds 2 times a day then unless the doctor stated otherwise those doses need to be 12 hours apart. I take mine at 8 morning and night. If she takes hers at 7am and 10 pm then the hours between 7&10 pm her dosage is lower which could cause break thru seizures.+I admire you for wanting to help your sister. If you really want information and need some questions answered there is a 24/7 hotline which anybody can call. The people can answer questions of all kinds and yes your questions can be answered when you call. You will also get answers on here too. In this forum you will get help from other people who have a family member who has epilepsy. Others may answer because they have done research. Then there are people like me who post because we want others to know what we have gone thru and speaking from our experiance we can help.Does she know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.I still have seizures myself but the seizures I have now are nothing like the seizures I was having when I was diagnosed. I have been living and dealing with epilepsy for 50+ years. I can now have a seizure while in a group of people talking and no one would know I had one. So the number of seizures has been reduced and the time in those seizures has also been reduced. It has taken a lot of time and many diferent medications to get where I am today. What she needs to do is ask her neurologist questions at every visit she has. I am still having seizures is this medication the best for my kind of seizures? Are there other medications that can treat my seiuzres better? Are these the only seizures I will have? By asking questions the neurologist sees that she wants results and if she doesn't ask questions he might think so a few seizures is ok with her. There are some docs that think just that way. I am blessed to have the neurologist I have he wants results too, He was answering questions I made back in the late 1980's when he joined the group. I have been with that group since 1970. One retired and I got the next he specialized and I got the next . He moved and I got the next he retired and I got the next. He moved and I got Doc.Oh and by all means try and keep a good relationship with her neurologist. At times she may want a question answered. If she has a good relationship many of those questions can be answered in a call.I wouls also suggest she get the My Epilepsy Diary. Watch the video which tells her how to use it. There is a note pad in it which she can input info on her seizures/ It is on line and if she gives her neurologist ppermission to bring it up he can look at all the data and graphs which might help him come up with different medications, dosages and procedures which can help her get seizure free. He might come up with a trigger for her seizures. Triggers are things that might start a seizure and they can also be found in here. Stress is a trigger for many people Along with lack of sleep. One of my biggies is getting to hot to fast. I do hope this helps

Hi KateFrom what you posted she has been having seizures for about 5 months. She is taking medications. Ok has she had a reduction in the number of seizures she was having? When was the last dosage change? What medication is she on? Dose she take meds 2 times a day?  All of these questions are important. If she was eased onto medications the neurologist generally wants the person taking them for a short while then the dosage can be raised or lowered. Medications and dosages are tricky at times. A medication that works for one person may not for the next and dosages are just like that. I have always been on high dosages and I have see posts in here that their seizures are being reducaed and controlled with the same medication I take only their dosage is less then 1/3 of mine. If the number of her seizures has been reduced then the medication is working and adjustments need to be made. If she takes meds 2 times a day then unless the doctor stated otherwise those doses need to be 12 hours apart. I take mine at 8 morning and night. If she takes hers at 7am and 10 pm then the hours between 7&10 pm her dosage is lower which could cause break thru seizures.+I admire you for wanting to help your sister. If you really want information and need some questions answered there is a 24/7 hotline which anybody can call. The people can answer questions of all kinds and yes your questions can be answered when you call. You will also get  answers on here too. In this forum you will get help from other people who have a family member who has epilepsy. Others may answer because they have done research. Then there are people like me who post because we want others to know what we have gone thru and speaking from our experiance we can help.Does she know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.I still have seizures myself but the seizures I have now are nothing like the seizures I was having when I was diagnosed. I have been living and dealing with epilepsy for 50+ years. I can now have a seizure while in a group of people talking and no one would know I had one. So the number of seizures has been reduced and the time in those seizures has also been reduced. It has taken a lot of time and many diferent medications to get where I am today. What she needs to do is ask her neurologist questions at every visit she has. I am still having seizures is this medication the best for my kind of seizures? Are there other medications that can treat my seiuzres better? Are these the only seizures I will have? By asking questions the neurologist sees that she wants results and if she doesn't ask questions he might think so a few seizures is ok with her. There are some docs that think just that way. I am blessed to have the neurologist I have he wants results too, He was answering questions I made back in the late 1980's when he joined the group. I have been with that group since 1970. One retired and I got the next he specialized and I got the next . He moved and I got the next he retired and I got the next. He moved and I got Doc.Oh and by all means try and keep a good relationship with her neurologist. At times she may want a question answered. If she has a good relationship many of those questions can be answered in a call.I wouls also suggest she get the My Epilepsy Diary. Watch the video which tells her how to use it. There is a note pad in it which she can input info on her seizures/ It is on line and if she gives her neurologist ppermission to bring it up he can look at all the data and graphs which might help him come up with different medications, dosages and procedures which can help her get seizure free. He might come up with a trigger for her seizures. Triggers are things that might start a seizure and they can also be found in here. Stress is a trigger for many people Along with lack of sleep. One of my biggies is getting to hot to fast. I do hope this helps

Hi KateFrom what you posted she has been having seizures for about 5 months. She is taking medications. Ok has she had a reduction in the number of seizures she was having? When was the last dosage change? What medication is she on? Dose she take meds 2 times a day? All of these questions are important. If she was eased onto medications the neurologist generally wants the person taking them for a short while then the dosage can be raised or lowered. Medications and dosages are tricky at times. A medication that works for one person may not for the next and dosages are just like that. I have always been on high dosages and I have see posts in here that their seizures are being reducaed and controlled with the same medication I take only their dosage is less then 1/3 of mine. If the number of her seizures has been reduced then the medication is working and adjustments need to be made. If she takes meds 2 times a day then unless the doctor stated otherwise those doses need to be 12 hours apart. I take mine at 8 morning and night. If she takes hers at 7am and 10 pm then the hours between 7&10 pm her dosage is lower which could cause break thru seizures.+I admire you for wanting to help your sister. If you really want information and need some questions answered there is a 24/7 hotline which anybody can call. The people can answer questions of all kinds and yes your questions can be answered when you call. You will also get answers on here too. In this forum you will get help from other people who have a family member who has epilepsy. Others may answer because they have done research. Then there are people like me who post because we want others to know what we have gone thru and speaking from our experiance we can help.Does she know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.I still have seizures myself but the seizures I have now are nothing like the seizures I was having when I was diagnosed. I have been living and dealing with epilepsy for 50+ years. I can now have a seizure while in a group of people talking and no one would know I had one. So the number of seizures has been reduced and the time in those seizures has also been reduced. It has taken a lot of time and many diferent medications to get where I am today. What she needs to do is ask her neurologist questions at every visit she has. I am still having seizures is this medication the best for my kind of seizures? Are there other medications that can treat my seiuzres better? Are these the only seizures I will have? By asking questions the neurologist sees that she wants results and if she doesn't ask questions he might think so a few seizures is ok with her. There are some docs that think just that way. I am blessed to have the neurologist I have he wants results too, He was answering questions I made back in the late 1980's when he joined the group. I have been with that group since 1970. One retired and I got the next he specialized and I got the next . He moved and I got the next he retired and I got the next. He moved and I got Doc.Oh and by all means try and keep a good relationship with her neurologist. At times she may want a question answered. If she has a good relationship many of those questions can be answered in a call.I wouls also suggest she get the My Epilepsy Diary. Watch the video which tells her how to use it. There is a note pad in it which she can input info on her seizures/ It is on line and if she gives her neurologist ppermission to bring it up he can look at all the data and graphs which might help him come up with different medications, dosages and procedures which can help her get seizure free. He might come up with a trigger for her seizures. Triggers are things that might start a seizure and they can also be found in here. Stress is a trigger for many people Along with lack of sleep. One of my biggies is getting to hot to fast. I do hope this helps

Helping Family Members with Seizures

Comments

Hi KateFrom what you posted

Submitted by Anonymous on Sun, 2014-08-10 - 21:08

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