28 yr old male with Juvenile myoclonic epilepsy

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Hi! My fiancé has had seizures since he was 16. We just recently saw a specialist and found out he has JME. My fiancé has been on too low of dosages and all the incorrect medications due to not knowing his proper diagnoses for so long. My fiancé broke down to me and express how he just wants to be seizure free. I was wondering if there were any males or even females who have been seizure free for a while and lived a normal, happy life?

Comments

seizures can change in that

Submitted by just_joe on Sun, 2017-04-23 - 10:39

seizures can change in that 12 year period of time. So his original diagnose might have been correct with the information that the neurologist had at that time. Now did he keep taking his meds correctly? Did he contact the neurologist and talk about the seizures he was having? Were his dosages ever changes? You see treatment and medications do need to be checked and as the body changes meds dosages need to be increased or decreased. Doctors need information from their patients or they think things are fine so no changes need to be made. When someone goes to the doctor and has a cough and the doctor treats a cold but it doesn't stop everything what do they do?? They return to the doctor or CALL them to find out WHY. It could have been the flu or pneumonia. So without information the diagnosis was wrong. Without input from the patient it can't be treated correctly.There have been and will be people that get seizure free and live their lives without seizures. What is a normal and happy life??? Is he thinking a life with seizures can't be happy or normal?? Each person has something different or an ailment that they have to do something with daily. An eye ailment they wear glasses. Hearing problem they have hearing aids. Some use crutches. Others have a heart ailment. So which is it he would rather have??I will never be completely seizure free. But that does not mean my life hasn't been full or happy. I have had the same group of neurologists since 1971. Some went into other specialties' and I got another one in the group. I went 3 years without a seizure and was fixing to take my drivers test. I never took it because I had a seizure. I worked with the neurologists and called them to find out why I was having an increase in my seizures. We discussed what had been happening and made adjustments over the phone with a visit to be made a few months later. At all of my appointments I always had questions. I answered theirs honestly. By asking questions and answering their questions I have gotten my seizures down to a seizure every 8-14 days. But we also reduced the time in those seizure to a few seconds. I could have one while eating at a table with you and you wouldn't know it. I helped raise kids. Taught them to swim. I worked in many fields of work and was part owner of a small business. So if I can do all that he can to.. It is the word control and how one looks at it. I don't let epilepsy control me. I was always being told I couldn't do this or that because of my epilepsy. I showed them a person with epilepsy can do what everybody else can. I was taken out of shop which I loved. I ended up in drafting. My junior year in high school I took a college course in mechanical drafting engineering. If I couldn't make it I could draw it. Parents wouldn't let me play football. But I lettered in football as a manager. First freshman to get a senior letter while still being a freshman. It is how a person looks at their issue. Acceptance is primary and what one does after that is theirs to do.He can be happy and live a long life. I have and I have been living with epilepsy for 50+ years. Sure there will be down times. Everybody has them.I look at time differently when it comes to seizures. How long are they and how much time have I had in all my seizures. I then look at all the other time I have been around. Which one of those is longer and happier and with friends and family? I'll take the longer period of time since it has been a happy life with a lot done. thee short one adds up to very little time. especially since my seizures today are seconds in time.After 7 years and all the seizures I had had I was down and asked "Why me God?" I got this soft voice in my head answering "Why not you?" Like I said each person has something they have to deal with. That includes the guy next door since you have no idea what ailment or problem he has.I hope this helpsJoe

seizures can change in that 12 year period of time. So his original diagnose might have been correct with the information that the neurologist had at that time. Now did he keep taking his meds correctly? Did he contact the neurologist and talk about the seizures he was having? Were his dosages ever changes? You see treatment and medications do need to be checked and as the body changes meds dosages need to be increased or decreased. Doctors need information from their patients or they think things are fine so no changes need to be made.  When someone goes to the doctor and has a cough and the doctor treats a cold but it doesn't stop everything what do they do?? They return to the doctor or CALL them to find out WHY. It could have been the flu or pneumonia. So without information the diagnosis was wrong. Without input from the patient it can't be treated correctly.There have been and will be people that get seizure free and live their lives without seizures. What is a normal and happy life??? Is he thinking a life with seizures can't be happy or normal?? Each person has something different or an ailment that they have to do something with daily. An eye ailment they wear glasses. Hearing problem they have hearing aids. Some use crutches. Others have a heart ailment. So which is it he would rather have??I will never be completely seizure free. But that does not mean my life hasn't been full or happy. I have had the same group of neurologists since 1971. Some went into other specialties' and I got another one in the group. I went 3 years without a seizure and was fixing to take my drivers test. I never took it because I had a seizure. I worked with the neurologists and called them to find out why I was having an increase in my seizures. We discussed what had been happening and made adjustments over the phone with a visit to be made a few months later. At all of my appointments I always had questions. I answered theirs honestly. By asking questions and answering their questions I have gotten my seizures down to a seizure every 8-14 days. But we also reduced the time in those seizure to a few seconds. I could have one while eating at a table with you and you wouldn't know it. I helped raise kids. Taught them to swim. I worked in many fields of work and was part owner of a small business. So if I can do all that he can to.. It is the word control and how one looks at it. I don't let epilepsy control me. I was always being told I couldn't do this or that because of my epilepsy. I showed them a person with epilepsy can do what everybody else can. I was taken out of shop which I loved. I ended up in drafting. My junior year in high school I took a college course in mechanical drafting engineering. If I couldn't make it I could draw it. Parents wouldn't let me play football. But I lettered in football as a manager. First freshman to get a senior letter while still being a freshman. It is how a person looks at their issue. Acceptance is primary and what one does after that is theirs to do.He can be happy and live a long life. I have and I have been living with epilepsy for 50+ years. Sure there will be down times. Everybody has them.I look at time differently when it comes to seizures. How long are they and how much time have I had in all my seizures. I then look at all the other time I have been around. Which one of those is longer and happier and with friends and family? I'll take the longer period of time since it has been a happy life with a lot done. thee short one adds up to very little time. especially since my seizures today are seconds in time.After 7 years and all the seizures I had had I was down and asked "Why me God?"  I got this soft voice in my head answering "Why not you?"  Like I said each person has something they have to deal with. That includes the guy next door since you have no idea what ailment or problem he has.I hope this helpsJoe

seizures can change in that 12 year period of time. So his original diagnose might have been correct with the information that the neurologist had at that time. Now did he keep taking his meds correctly? Did he contact the neurologist and talk about the seizures he was having? Were his dosages ever changes? You see treatment and medications do need to be checked and as the body changes meds dosages need to be increased or decreased. Doctors need information from their patients or they think things are fine so no changes need to be made. When someone goes to the doctor and has a cough and the doctor treats a cold but it doesn't stop everything what do they do?? They return to the doctor or CALL them to find out WHY. It could have been the flu or pneumonia. So without information the diagnosis was wrong. Without input from the patient it can't be treated correctly.There have been and will be people that get seizure free and live their lives without seizures. What is a normal and happy life??? Is he thinking a life with seizures can't be happy or normal?? Each person has something different or an ailment that they have to do something with daily. An eye ailment they wear glasses. Hearing problem they have hearing aids. Some use crutches. Others have a heart ailment. So which is it he would rather have??I will never be completely seizure free. But that does not mean my life hasn't been full or happy. I have had the same group of neurologists since 1971. Some went into other specialties' and I got another one in the group. I went 3 years without a seizure and was fixing to take my drivers test. I never took it because I had a seizure. I worked with the neurologists and called them to find out why I was having an increase in my seizures. We discussed what had been happening and made adjustments over the phone with a visit to be made a few months later. At all of my appointments I always had questions. I answered theirs honestly. By asking questions and answering their questions I have gotten my seizures down to a seizure every 8-14 days. But we also reduced the time in those seizure to a few seconds. I could have one while eating at a table with you and you wouldn't know it. I helped raise kids. Taught them to swim. I worked in many fields of work and was part owner of a small business. So if I can do all that he can to.. It is the word control and how one looks at it. I don't let epilepsy control me. I was always being told I couldn't do this or that because of my epilepsy. I showed them a person with epilepsy can do what everybody else can. I was taken out of shop which I loved. I ended up in drafting. My junior year in high school I took a college course in mechanical drafting engineering. If I couldn't make it I could draw it. Parents wouldn't let me play football. But I lettered in football as a manager. First freshman to get a senior letter while still being a freshman. It is how a person looks at their issue. Acceptance is primary and what one does after that is theirs to do.He can be happy and live a long life. I have and I have been living with epilepsy for 50+ years. Sure there will be down times. Everybody has them.I look at time differently when it comes to seizures. How long are they and how much time have I had in all my seizures. I then look at all the other time I have been around. Which one of those is longer and happier and with friends and family? I'll take the longer period of time since it has been a happy life with a lot done. thee short one adds up to very little time. especially since my seizures today are seconds in time.After 7 years and all the seizures I had had I was down and asked "Why me God?" I got this soft voice in my head answering "Why not you?" Like I said each person has something they have to deal with. That includes the guy next door since you have no idea what ailment or problem he has.I hope this helpsJoe

I'm in nearly the same

Submitted by Dillon Mesanko on Tue, 2017-05-09 - 18:49

I'm in nearly the same situation. I grew into it when I was 16. From my experience it's finding the right combination of medications, not drinking or doing drugs, keeping a strict sleeping schedule and a healthy diet can help. For me it's not easy or forgiving. One slip up and I can easily have a seizure, but I've gone years without one so the hard work pays off and the fear begins to go away, it will always be there but life's not so scary once you get a handle of it. Hopefully one day I grow out of it.