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.

Myoclonic jerks occuring in the evening?

Thu, 11/01/2007 - 13:10

Topic: Diagnostic Dilemmas and Testing

Hi, I have never posted on here before but I am a bit freaked out and everyone seems to know so much I was hoping someone could help me! I was diagnosed with Juvenile myoclonic epilepsy almost 3 years ago (I am 23 now). I had been having seizures (or twitches as I thought they were) for about 4 years and didn't know what they were. After having a serious scalding accident, JME was diagnosed. I understood that it only occured in the morning as it was associated with sleep patterns/deprivation. This seemed to fit my symptoms pretty well. Unfortunately my neurologist wasn't particularly thorough when diagnosing me and I went away with many unanswered questions. However I was well established on my meds (Lamictal) and I had my drivers licence back so I just put it all to the back of my mind and got on with things. Now I am beginning to have serious doubts about my initial diagnosis and the subsequent follow up checks I had. Before I was established on my medication I would only have seizures/jerks early in the morning or if I had a nap in the middle of the day. However now I have started to have them in the late evening (between 7-9pm). This is worrying a) because I understood that they ONLY took place in the morning and b) because they were happening depsite being on my meds. Obviously I am extremely freaked out and a bit terrified of going to see my doctor because of what this might mean. I just wanted to know if anyone else had ever experienced myoclonic seizures at other times of the day and NOT related to sleep and if so whether their epilepsy was diagnosed as JME or something else. Also, what do you think will be my doctors response if I go to him and say that I have been having seizures again (albeit very small ones). Also (sorry I know this is a long message), I have always experienced absences associated with myoclonic jerks. In fact I quite often have absences with no jerk afterwards (although I never really know as i'm not always aware of them). Are absences classed as epilepsy and if I am having absences but no jerks will that still be enough for my drivers lilcence to be taken away from me? I would really appreciate any answers or help anyone could give me - I know I sound like a bit of a whinger! Thanks!

Comments

Re: Myoclonic jerks occuring in the evening?

Submitted by ljc on Tue, 2008-01-29 - 18:23

my son was diagnosed with myclonic epilepsy 10 years ago,he is now 11. He has seizures all day,no certain time.I had never heard they only happen in the morning.Like you,he has stares with no jerking,but most of the time it is jerking.He takes zonegran and depakote,nothing we have tried has worked,unless i change my mind,we are waiting to have the vns.

Re: Myoclonic jerks occuring in the evening?

Submitted by confused924 on Wed, 2008-01-30 - 12:32

My daughter began having arm jerks upon waking (whether from an afterschool nap, falling asleep on the couch in the evening or waking up in the morning) in February, 2007. After a grand mal seizure in July, she was diagnosed with JME. She was put on Keppra and had a second grand mal seizure the day after in September while taking a shower! We thought she was doing better but had a breakthrough seizure on December 15. She did a video-eeg on 1/4/08 and had "events". So, now we are in the process of putting her on Lamictal and eventually taking her off of the Keppra. She is only on 25mg for the 1st two weeks, then 50 mg for 2 weeks and in will increase from there. I can't say that I've noticed her having jerks in the evening. Sometimes as she's falling asleep she appears to be jerking, but they've told me that that's actually normal (is there such a thing) myoclonic jerks. Has anyone been taking Lamictal as a monotheraphy and had any luck controlling JME seizures (CT, myoclonic and absence)?

Re: Myoclonic jerks occuring in the evening?

Submitted by bmarshall2 on Thu, 2008-02-07 - 10:57

I have been on Lamictal for two years and it has helped me a lot. It was the only medication that my doctor would put me on. Of course, at first it was a gradual increase of doses, but now I am 150mg twice a day and it is good. When I first started taking it I was really dizzy, tired, nauseous, etc...Now, I have to remind myself that I took my medication. I dont have anymore side-effects.

Brittani

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.