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Myoclonic seizure sufferers?
Thu, 06/16/2005 - 14:48Topic: Medication Issues
Anyone else here, suffer with Myoclonic seizures? I'm on epilim 1500mg daily. Even with a full dosage, when say... typing, or especially when playing the drums, i notice an increase in 'jerks'. Does anyone else have this problem, or know how to overcome it totally? Bear in mind I've tried increasing my dosage every now & then.
Comments
RE: Myoclonic seizure sufferers?
Submitted by Willsmom on Fri, 2005-06-17 - 09:02
ChrisBefore increasing your drug dosages or adding any new AED's try sleeping more and doing what you can to get a quality sleep on a regular basis.After a couple of months of good sleeps... there may be a decrease in Myoclonic activity.If not then it will be time to talk to your Neuro.Take care
RE: Myoclonic seizure sufferers?
Submitted by mexican_fire on Thu, 2005-06-16 - 14:48
Chris~~
I am 32 and suffer from Janz Syndrome (Juvenile Myoclonic Epilepsy). They didn't catch it until 2003, but told me that I started with it at 13 or 14 years old.
I take 1500 mgs of Depakote and 3600 mgs of Neurontin. The Depakote controls My Absence and Myoclonics, the Neurontin is supposed to be used for partial seizures, but an unlabeled use is for adjunctive use in controlling GTCs.
Depakote is still the gold standard first-line drug of choice for controlling Myoclonic seizures. Over the last 5 years or so, they have started using Lamictal as a second-line drug of choice to control Myoclonic seizures. Most docs always try Depakote/Depakene, or any other Depakote drugs to start, and if treatment using that fails, then they go to using Lamictal.
However, Lamictal is only used in people 16 and over for JME seizures.
I have myoclonic jerks probably every day, but they are mild and don't interefere with what I am doing. It is just a mild shock-like jerk, I mainly get them in morning for several hours ater I get up. It usually starts when I am in the bathroom brushing my teeth and I throw my toothbrush in the sink. I can get them in my neck (not too often), my shoulders (frequently), arms (frequently), upper legs (frequently), torso (moderately).
They are hard to control sometimes. If they occur in JME the whole mess is easily controlled with Depakote for some people, however, with me it has been a huge mess, all the testing, and EMU visists. etc, to find it.
I will either get them in clusters, or by themselves. Sometimes I will even have them for several hours and eventually they lead into a GTC.
I have mostly Grand Mal seizures. Myoclonics are next and the Absences last. The Myoclonics are the main seizure type in the disorder I have, but Grand Mals make themselves more known on a regular basis.
Can't go off the drug, it is a life-time disorder.
Last night I had 2 Grand Mals that were 20 minutes apart, and after the first one, I had some clonic activity in my left arm/hand for about 1 minute, and that was new for me.
Nancy
Chris~~
I am 32 and suffer from Janz Syndrome (Juvenile Myoclonic Epilepsy). They didn't catch it until 2003, but told me that I started with it at 13 or 14 years old.
I take 1500 mgs of Depakote and 3600 mgs of Neurontin. The Depakote controls My Absence and Myoclonics, the Neurontin is supposed to be used for partial seizures, but an unlabeled use is for adjunctive use in controlling GTCs.
Depakote is still the gold standard first-line drug of choice for controlling Myoclonic seizures. Over the last 5 years or so, they have started using Lamictal as a second-line drug of choice to control Myoclonic seizures. Most docs always try Depakote/Depakene, or any other Depakote drugs to start, and if treatment using that fails, then they go to using Lamictal.
However, Lamictal is only used in people 16 and over for JME seizures.
I have myoclonic jerks probably every day, but they are mild and don't interefere with what I am doing. It is just a mild shock-like jerk, I mainly get them in morning for several hours ater I get up. It usually starts when I am in the bathroom brushing my teeth and I throw my toothbrush in the sink. I can get them in my neck (not too often), my shoulders (frequently), arms (frequently), upper legs (frequently), torso (moderately).
They are hard to control sometimes. If they occur in JME the whole mess is easily controlled with Depakote for some people, however, with me it has been a huge mess, all the testing, and EMU visists. etc, to find it.
I will either get them in clusters, or by themselves. Sometimes I will even have them for several hours and eventually they lead into a GTC.
I have mostly Grand Mal seizures. Myoclonics are next and the Absences last. The Myoclonics are the main seizure type in the disorder I have, but Grand Mals make themselves more known on a regular basis.
Can't go off the drug, it is a life-time disorder.
Last night I had 2 Grand Mals that were 20 minutes apart, and after the first one, I had some clonic activity in my left arm/hand for about 1 minute, and that was new for me.
Nancy