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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 JMEJill on Wed, 2008-01-30 - 01:21
I've only just been diagnosed with JME (a few months ago), but before being on medication, my myoclonic jerks happened any time of the day, and weren't any more likely to occur in the morning than in the evening.

Re: Myoclonic jerks occuring in the evening?

Submitted by willsmom on Wed, 2008-01-30 - 11:18

I visited this site today with the same question in mind. My son's seizures were nicely predictable in the morning or nocturnally for years. This made the afternoons and evening relatively safe for things like showers and school. The T/C seizures have now begun to happen in the afternoon and evening. He is taking Topamax, zonegran, and has recently gotten rid of Phenobarb. The change in pattern seems to coincide with the introduction and increase in Lamictal. The Lamictal has been wonderful in helping his thinking and functioning.. but the new time for the T/C seizures is disturbing.

for Ellie.. I hate to say this but if you are having Jerks.. you should not drive. 

I visited this site today with the same question in mind. My son's seizures were nicely predictable in the morning or nocturnally for years. This made the afternoons and evening relatively safe for things like showers and school. The T/C seizures have now begun to happen in the afternoon and evening. He is taking Topamax, zonegran, and has recently gotten rid of Phenobarb. The change in pattern seems to coincide with the introduction and increase in Lamictal. The Lamictal has been wonderful in helping his thinking and functioning.. but the new time for the T/C seizures is disturbing.

for Ellie.. I hate to say this but if you are having Jerks.. you should not drive. 

Re: Myoclonic jerks occuring in the evening?

Submitted by Avra Schwartz on Wed, 2008-01-30 - 09:19
I am 24 and was diagnosed with JME after a grand mal seizure this past summer. Im still really not even sure what exactly that diagnosis entails but .... i too experience the myclonic jerks.  pretty much throughout the day, mostly in my hands and feet.  the reason I'm responding to your message is because my neurologist would not put me on lamictal because she said one of the side effects for some is an increase in the jerks.  so perhaps that is why you are having more jerks now... maybe ask your doctor about switching meds. 

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