Mom with Epilepsy

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Hi all Just joined the group, and recently I am in need of some support from others with Epilepsy, and see where we can identify with one another. I've was diagnosed with epilepsy when I was 11 months old. However, some doctors believe I was born with it. I'm a 35 year old new mom, to a daughter whose now 8 months old. I have complex partial seizures approximately 2 to 3 times a week. They are better than they used to be. As a child, I would completely black out during an episode and not know what happened when I came to. Although the seizures are less frequent, they have never been controlled by medication, and I've been on almost every AED out there. Currently, I am taking (3) 500 mg of Keppra 2x day; and my doctor says that's the highest does he'll go. We have informally spoken about VNS devise, however he believes that it may not work for "my type of seizures." I've also been researching on my own about CBD oil and it's benefits for epilepsy, but am still very much in the dark on it. Now, as I am adjusting to mom life, I find myself more upset after a seizure, and I'm mentally hurting myself with thoughts like: "I can't even drive, and my daughter will have license before I do" "I'm afraid I will be holding Renee during a severe seizure where I clench up all muscles" "She's going to be scared of me when she sees that I have one" "Kids in school will call her the girl with the retarded mom" and mostly "how can I take care of my daughter when I can barely take care of myself???" And other similar thoughts. Does anyone have any coping mechanisms for a new mom feeling filled with shame and embarrassment?? Also any information or experiences that any others have with CBD oil and epilepsy would be extremely helpful.

Comments

Currently, I am taking (3)

Submitted by just_joe on Mon, 2016-12-05 - 17:31

Currently, I am taking (3) 500 mg of Keppra 2x day; and my doctor says that's the highest does he'll go. I have complex partial seizures approximately 2 to 3 times a week. but then later you post "how can I take care of my daughter when I can barely take care of myself???" I was having about 5 a week and worked and did everything everybody else di except drive. When I was a teen I took care of my brother who was born when I was 15. Back then I was having focal seizures that generalized and at times those looked like a tonic-clonic seizures. I had no problem taking care of him and making sure he was in a place where if I had one of those seizures he would be safe. I had no problem when he saw me in them. It is how you deal with them and teach them that does make a difference. I know about the kids in school. Been there done that. If you teach her right she then can teach those kids in school. As for her getting her license before you do then you haven't really learned much in the 30+ years you have lived with epilepsy. There are some of us that will never drive. I know how and will if I need to in an emergency. Why risk having a seizure while driving?As for medications yes and controlling your seizures note all the seizures you have and anything that is different that happened that day. Always ask " I still have a few seizures a month. Would changing the dosage help? or would adding another medication to my keppra help" Are there other procedures that might help control my seizures better???? I know that is how I have gotten results and better control of my seizures. We had cotton my seizures down to 2-4 a month. We coupled my keppra with vimpat and the seizures were reduced to a seizure every 8-14 days. It also reduced the time in my seizures. I can have a seizure now while discussing an issue with you and you wouldn't know I had it.a new mom feeling filled with shame and embarrassment?? As for CBD oil it calms down the central nervous system which slows down the electrical impulses so fewer impulses will hit wrong.Always research and question your neurologist. Medication and dosage changes have gotten me where I am today. We had discussed all other procedures and I am not a candidate for any of them.I hope this help you and you get seizure free and your license before your daughter gets hersJoe

Currently, I am taking (3) 500 mg of Keppra 2x day; and my doctor says that's the highest does he'll go. I have complex partial seizures approximately 2 to 3 times a week. but then later you post "how can I take care of my daughter when I can barely take care of myself???"  I was having about 5 a week and worked and did everything everybody else di except drive. When I was a teen I took care of my brother who was born when I was 15. Back then I was having focal seizures that generalized and at times those looked like a tonic-clonic seizures. I had no problem taking care of him and making sure he was in a place where if I had one of those seizures he would be safe. I had no problem when he saw me in them. It is how you deal with them and teach them that does make a difference. I know about the kids in school. Been there done that. If you teach her right she then can teach those kids in school. As for her getting her license before you do then you haven't really learned much in the 30+ years you have lived with epilepsy. There are some of us that will never drive. I know how and will if I need to in an emergency. Why risk having a seizure while driving?As for medications yes and controlling your seizures note all the seizures you have and anything that is different that happened that day. Always ask " I still have a few seizures a month. Would changing the dosage help? or would adding another medication to my keppra help" Are there other procedures that might help control my seizures better????  I know that is how I have gotten results and better control of my seizures. We had cotton my seizures down to 2-4 a month. We coupled my keppra with vimpat and the seizures were reduced to a seizure every 8-14 days. It also reduced the time in my seizures. I can have a seizure now while discussing an issue with you and you wouldn't know I had it.a new mom feeling filled with shame and embarrassment??  As for CBD oil it calms down the central nervous system which slows down the electrical impulses so fewer impulses will hit wrong.Always research and question your neurologist. Medication and dosage changes have gotten me where I am today. We had discussed all other procedures and I am not a candidate for any of them.I hope this help you and you get seizure free and your license before your daughter gets hersJoe

Currently, I am taking (3) 500 mg of Keppra 2x day; and my doctor says that's the highest does he'll go. I have complex partial seizures approximately 2 to 3 times a week. but then later you post "how can I take care of my daughter when I can barely take care of myself???" I was having about 5 a week and worked and did everything everybody else di except drive. When I was a teen I took care of my brother who was born when I was 15. Back then I was having focal seizures that generalized and at times those looked like a tonic-clonic seizures. I had no problem taking care of him and making sure he was in a place where if I had one of those seizures he would be safe. I had no problem when he saw me in them. It is how you deal with them and teach them that does make a difference. I know about the kids in school. Been there done that. If you teach her right she then can teach those kids in school. As for her getting her license before you do then you haven't really learned much in the 30+ years you have lived with epilepsy. There are some of us that will never drive. I know how and will if I need to in an emergency. Why risk having a seizure while driving?As for medications yes and controlling your seizures note all the seizures you have and anything that is different that happened that day. Always ask " I still have a few seizures a month. Would changing the dosage help? or would adding another medication to my keppra help" Are there other procedures that might help control my seizures better???? I know that is how I have gotten results and better control of my seizures. We had cotton my seizures down to 2-4 a month. We coupled my keppra with vimpat and the seizures were reduced to a seizure every 8-14 days. It also reduced the time in my seizures. I can have a seizure now while discussing an issue with you and you wouldn't know I had it.a new mom feeling filled with shame and embarrassment?? As for CBD oil it calms down the central nervous system which slows down the electrical impulses so fewer impulses will hit wrong.Always research and question your neurologist. Medication and dosage changes have gotten me where I am today. We had discussed all other procedures and I am not a candidate for any of them.I hope this help you and you get seizure free and your license before your daughter gets hersJoe

Mom with Epilepsy

Comments

Currently, I am taking (3)

Submitted by just_joe on Mon, 2016-12-05 - 17:31

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