I was just diagnosed with this as well but have had epilepsy my whole life (genetically through my morher) I have never been allowed to drive and have all 3 types of seizures that aren't just limited to the morning. I just had to tell my job that I'm probably not coming back. I am not allowed to return to any job until seizure free :( (unable to work around flickering lights/screens) I'm 29 years old. My mother who is also epileptic is already on SSI and has been for a long time now and had to stop working in her mid to late 20s. What I do know is that although they can give you a generalized description, everyone's experience is different bc everyone's brain is different. Yet I'm still hoping that I will one day be able to return to work.
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You should get your facts straight before you post derogatory comments on the internet. Having epilepsy doesn't make you slow. The medication does. As a mother you should know not to use that word. I have jme and am perfectly healthy.
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My sister had her first seizure at 16 yrs of age due to her mentrual cycle and sleep deprivation. She was diagnosed with jme shortly after. She's had all three kinds of seizures associated with this type of epilepsy. She is now 24 and was seizure free for 3 years and now suddenly she's having these myclonic jerks again. Last monday she had a full blown gtcs early in the morning, had clusters of absense and myclonic jerks the whole day then had another gtcs that evening. She was ok for 5 days then started jerking again yesterday (only lasted a few hours) then was ok the rest of the day. This morning she woke up with jerks and has had them all day. Her mouth also twitches with these myclonic jerks which I've never seen her do before. Her jerks are so bad, she almost goes into a gtcs.
She takes topamax (topamoprate or however you spell it) 100mg a day bbut I'm starting to think it isn't enough anymore. Going to get a referral to see a neurologist asap to fix the problem. She has had a normal life. Her memory isn't that great but could be because of the medicine. Right now we're taking extra precaution to make sure she doesn't have anymore gtcs as they affecr her immensly. I hope all of you have blessed lives and I hope you all get the answers that you need. God bless
She takes topamax (topamoprate or however you spell it) 100mg a day bbut I'm starting to think it isn't enough anymore. Going to get a referral to see a neurologist asap to fix the problem. She has had a normal life. Her memory isn't that great but could be because of the medicine. Right now we're taking extra precaution to make sure she doesn't have anymore gtcs as they affecr her immensly. I hope all of you have blessed lives and I hope you all get the answers that you need. God bless
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You say you were off ur meds while pregnant, was this deliberate or you just forgot to take them? Was the dose of your meds increased during pregnancy, if yes by how? I am so sorry to ask such personal questions but I need to knw cos my girlfriend was diagnosed with JME as a teenager and we plan to get married and have children, i am just a lil worried about whether our children may have it and how to handle it.
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It really shocked me to see that someone stated that 90% of people with JME are retarded. Who told you that, oreilly? I was diagnosed with JME at the age of 15. I kind of felt the same way when I was told that this would be a life long condition, but that shouldn't stop you from ANYTHING. I am now 21 years old and I have controlled my seizures. I drive, I go to college 7 hours away from my hometown and I start graduate school next semester. I have even studied abroad in Europe for a month. Yes, I may drift off into space once every so often and my speech can be off at times, but don't let anyone or anything stop you from doing what YOU want. Yes, your life may be different, but you're in control. Just take care of yourself, and don't let anyone else's ignorance ruin what YOU want to do.
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I am having exactly the same problem way down the line! I am going on 26 and I was diagnosed at 17. My meds worked fine for a long time and now I am starting to get problems with jerks again and have even had a grand mal recently. I am very confused. Anyone else experienced this and have more info??? Thank you in advance for any responses.
P.s. I must also say...what an a** that Oreilly is!! 90% are not retarded...NOT AT ALL...what a horrible piece of work she is!
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I'm 14 yrs old and I have JME too.. So far everything has been ok for the most part it is very difficult tho espically when people try to understand what we go through.. This condition WILL change everything for her. And sadly there's nothing you can do but give her your love and support and pray everything will get better the medication I suggest is kepra. I know there's another medication for JME that will prevent her from ever having children it starts with an M and it has MANY more side effects than kept a my thoughts and prayers are with you xoxo
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I am 18 with Juvenile Myoclonic Epilepsy that was diagnosed at 12-13. I have been told I am really smart. (A's & B's in high school currently) It is well controlled by medication & I am not on the ketogenic diet. I exercise a lot and eat relatively healthy. Unfortunately I will not grow out of it and will be lifelong.
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My JME is well controlled on keppra actually. Unfortunately I won't grow out of it and it will be life long.
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It was a deliberate decision that was made with my doctors. I worked closely with them to come off my meds prior to becoming pregnant. With my last pregnancy, we chose to slowly go back on the meds during the last trimester. Prior to my first pregnancy, I was seizure free for 16 years. I had a seizure post-partum with my first baby and during labor with my second baby. We were hoping that if if was back on my medicine that I could have a seizure free labor and recovery (my pregnancies were always great and incident free). However, I had 2 seizures post-partum. Obviously, hormones most play a part in my triggers so are not planning any more pregnancies. This is something that would need to be discussed carefully with the medical team (including ob/gyn). Some things to consider include : how well seizures are currently controlled, what medication(s) are currently taken, what known triggers are and what the plan to reduce/avoid those are. Good luck!
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