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new diagnosis of JME and confused any help appreciated?
Thu, 07/14/2005 - 16:22I was diagnosed pending a EEG and a chat with a neurologist with JME. I have been having very jerky involuntary movements since i was 7 or 8 which was first noticed when i was having my hair put up for school in front of the morning news. I would hit the floor like a sack of potatoes and go very tense. the doctors have for years put it down to growth spurts, too many hormones from adolescence and low blood pressure but a few days ago i saw another doctor about this and told me it was JME. My problem really is that i dont know much if anything about it, how i can prevent it happening and what to expect. Does this type of thing normally go worse? I was admitted in to hospital from a nightclub after a very violent seizure but nothing more was said about it on dishcharge - this was 1 year ago. I dont know wether its related but my mood is very variable some days im fine and some days EVERYTHING will just irritate me and i have no patience, could just be hormones i suppose but its never happened to me before the past 4 - 5 months. Also is it normal to just be lying in bed and your arms jerk? If someone could give me some answers that would be great thanks alot peeps. x
Comments
RE: RE: new diagnosis of JME and confused any help appreciated?
Submitted by worldzapart on Thu, 2005-07-14 - 13:09
RE: RE: RE: new diagnosis of JME and confused any help appreciat
Submitted by kgarroutte on Thu, 2005-07-14 - 16:22
I too have JME, just diagnosed. Since I was 15 I was told they were petit mal seizures, but that was incorrect. I live in CA and had to go 3 months with no seizures (controlled by meds) in order to be able to drive. My myoclonic seizures (I have tonic clonics also) only happen in the am, and are incredibly related to my sleep, and quality of. My tonic clonics are usually after having a few myoclonic jerks. I am asking my doctor to switch my meds, the one I was on didn't treat myoclonics. I know that Depakote does, as well as Lamictral, Topamax and Zenodrin. As far as I know, from what I have read, you don't grow out of JME, as with some other types of epilepsy. I have also read that Tegretol will increase myoclonic jerks, wish someone had told me that, I have been on that med for 10+ years. I had more seizures after childbirth, even dropping my newborn. Listen to your md and take your meds, regulation is the key to control. Good Luck.
Kim
I too have JME, just diagnosed. Since I was 15 I was told they were petit mal seizures, but that was incorrect. I live in CA and had to go 3 months with no seizures (controlled by meds) in order to be able to drive. My myoclonic seizures (I have tonic clonics also) only happen in the am, and are incredibly related to my sleep, and quality of. My tonic clonics are usually after having a few myoclonic jerks. I am asking my doctor to switch my meds, the one I was on didn't treat myoclonics. I know that Depakote does, as well as Lamictral, Topamax and Zenodrin. As far as I know, from what I have read, you don't grow out of JME, as with some other types of epilepsy. I have also read that Tegretol will increase myoclonic jerks, wish someone had told me that, I have been on that med for 10+ years. I had more seizures after childbirth, even dropping my newborn. Listen to your md and take your meds, regulation is the key to control. Good Luck.
Kim
RE: new diagnosis of JME and confused any help appreciated?
Submitted by Willsmom on Thu, 2005-07-14 - 09:00
How old are you? How many years has this been going on? Alcohol and sleep deprivation can make the seizures worse. It's interesting that you have been able to go without AED's to control the seizures.Has your neurologist suggested drug treatment?The Jerking in the morning sounds like JME.