Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Seizure free w/ JME?
Tue, 05/31/2005 - 16:02My husband has JME and is trying to get the right combination of medicines to control his seizures.
I would like to know of those of you who have JME, how long of a period of time did you go with out seizures, and what medicines you take or have taken.
The longest period of time my husband went seizure free was 13 months. He is currently taking Lamictal 250mgs BID, Zonegran 200mgs and Klonopin is a very, very small dosage that we are weaning him off of (tolerance issues).
-Sarah
RE: Seizure free w/ JME?
Submitted by mexican_fire on Tue, 2005-05-31 - 16:02
I have JME, too. I also have TLE which makes treating the JME rather difficult.
But, AS for the JME of Janz itself, no, there is no such thing as actually being truly seizure-free. JME of Janz is a lifelong disorder and needs medication for the person's entire life. Weaning off meds causes a VERY high risk of seizures returning, which most do, if weaned.
IT is a very stubborn epileptic syndrome, and is generally genetic rather than Idiopathic.
IT is found mainly in females, but rarely oncei n a while men become afflicted with it.
Usually there are up to 3 seizure types involved. Grand Mals, Myoclonic jerks, and Absences.
Only 30-40% of people with JME of Janz have Absences. Most have trouble with T-Cs and Myoclonics.
The Myoclonic jerks can occur in the head, neck, shoulders, upper arms, hands, upper legs, and torso.
The jerks mainly occur in the morning jsut after waking and are brought out by fatigue and stress. Sometimes, Myoclonic jerks can go into a Grand Mal seizure or vise versa.
Meds that work best for JME of Janz include the main first line drug of choice Depakote and any of its coutnerparts.
Ethosuximide is used to control Absences, Klonopin or Tranxene are both used to treat the Myoclonic jerks, as is the Depakote (jerks don't respond to any other drug other than Depakotes). Dilantin, Tegretol and Topamax are used to control the TCs.
A good combination of AEDs includes Ethosuximide, Depakote, and Dilantin, with Klonopin on the side for maintence. Tegretol has a habit of making jerks worse, but if used in the right combo, it doesn't cause them to be worse. IT jsut has to be watched.
That is what someone might take for seizure control with JME of Janz. Lamictal isn't worth anything for people with anything with Myoclonic activity. That is mainly used for people with partial seizures with or without secondary generalization.
I take 1375 mgs of Depakote, and 3600 mgs of Neurontin to control the Partial epilepsy.
I have broken many things from throwing them dduring a jerk, I have also injured myself alot from being thrown to the ground.
I have a Border Collie that is good at telling when I am going to seize. We also own a miniature Schauzer named Digger, for her habits aren't taht great in the desert yard we have.
I have Grand Mals 85% of the time, then I also have Myoclonics, and Absences in the JME of Janz.
Nancy
I have JME, too. I also have TLE which makes treating the JME rather difficult.
But, AS for the JME of Janz itself, no, there is no such thing as actually being truly seizure-free. JME of Janz is a lifelong disorder and needs medication for the person's entire life. Weaning off meds causes a VERY high risk of seizures returning, which most do, if weaned.
IT is a very stubborn epileptic syndrome, and is generally genetic rather than Idiopathic.
IT is found mainly in females, but rarely oncei n a while men become afflicted with it.
Usually there are up to 3 seizure types involved. Grand Mals, Myoclonic jerks, and Absences.
Only 30-40% of people with JME of Janz have Absences. Most have trouble with T-Cs and Myoclonics.
The Myoclonic jerks can occur in the head, neck, shoulders, upper arms, hands, upper legs, and torso.
The jerks mainly occur in the morning jsut after waking and are brought out by fatigue and stress. Sometimes, Myoclonic jerks can go into a Grand Mal seizure or vise versa.
Meds that work best for JME of Janz include the main first line drug of choice Depakote and any of its coutnerparts.
Ethosuximide is used to control Absences, Klonopin or Tranxene are both used to treat the Myoclonic jerks, as is the Depakote (jerks don't respond to any other drug other than Depakotes). Dilantin, Tegretol and Topamax are used to control the TCs.
A good combination of AEDs includes Ethosuximide, Depakote, and Dilantin, with Klonopin on the side for maintence. Tegretol has a habit of making jerks worse, but if used in the right combo, it doesn't cause them to be worse. IT jsut has to be watched.
That is what someone might take for seizure control with JME of Janz. Lamictal isn't worth anything for people with anything with Myoclonic activity. That is mainly used for people with partial seizures with or without secondary generalization.
I take 1375 mgs of Depakote, and 3600 mgs of Neurontin to control the Partial epilepsy.
I have broken many things from throwing them dduring a jerk, I have also injured myself alot from being thrown to the ground.
I have a Border Collie that is good at telling when I am going to seize. We also own a miniature Schauzer named Digger, for her habits aren't taht great in the desert yard we have.
I have Grand Mals 85% of the time, then I also have Myoclonics, and Absences in the JME of Janz.
Nancy