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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 diziizle on Sat, 2010-01-30 - 08:23

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.

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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.

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Re: Myoclonic jerks occuring in the evening?

Submitted by shutterbugg on Mon, 2010-02-08 - 01:11

Hi there, I have been diagnosed with Primary Generalized Epilepsy which can exhibit myoclonic seizues, absence seizures, and generalized tonic-clonic seizures.  I happen to have all three.  From what I understand this can develop in adolescence as mine did. If this is the case it is a life long commitment on meds and cant be corrected by surgery. My Myoclonics tend to happen in the evening and often wake me from my sleep. I am currently on valproic acid 1000mg a day and tomimax 400mg a day and now currently 1.5mg of clonaepam at bed time to help with the myoclonic seizures.  I have only been on ir for just over a week since released from hospital and it seems to be working for the most part. Not a complete fix, but the side effects I am really struggling with.  So I need to give it another week to see what is worse, dealing with the myoclonic seizures or the horrible side effects of the clonazepam.  Its a catch 22.  I quess with seizures its a trial and error with coming up with the correct medication concoction.

I hope this was somewhat helpful, drop me a line if you have anymore questions, I would love to help if I can, I learnt a lot while in the hospital.

 

Hi there, I have been diagnosed with Primary Generalized Epilepsy which can exhibit myoclonic seizues, absence seizures, and generalized tonic-clonic seizures.  I happen to have all three.  From what I understand this can develop in adolescence as mine did. If this is the case it is a life long commitment on meds and cant be corrected by surgery. My Myoclonics tend to happen in the evening and often wake me from my sleep. I am currently on valproic acid 1000mg a day and tomimax 400mg a day and now currently 1.5mg of clonaepam at bed time to help with the myoclonic seizures.  I have only been on ir for just over a week since released from hospital and it seems to be working for the most part. Not a complete fix, but the side effects I am really struggling with.  So I need to give it another week to see what is worse, dealing with the myoclonic seizures or the horrible side effects of the clonazepam.  Its a catch 22.  I quess with seizures its a trial and error with coming up with the correct medication concoction.

I hope this was somewhat helpful, drop me a line if you have anymore questions, I would love to help if I can, I learnt a lot while in the hospital.

 

Re: Myoclonic jerks occuring in the evening?

Submitted by santanaCYANIDE on Mon, 2010-10-04 - 16:44

Before i started taking Lamictal for JME, i would have seizures in the morning, and in the afternoon if i took a nap. Now, that only happens if i don't take my medicine. (obviously).

 However, about 2 months ago, i went to a concert and a crowdsurfer landed on me.. Also, i got kneed in the head.  And there were flashing lights. I didn't have any seizures that night, but the next day i started having them at night.  Usually, I can go to sleep after having seizures and when i wake up, everything is fine. But on that particular night, I was having seizures for about 3 hours, and everytime i'd fall asleep, a seizure(s) would wake me up.

 So maybe you're having seizures at night because of some sort of head injury? And there are many other things that could cause you to have a seizure even if you're on meds. Ie, drugs, alcohol, sleep deprivation, etc.

Before i started taking Lamictal for JME, i would have seizures in the morning, and in the afternoon if i took a nap. Now, that only happens if i don't take my medicine. (obviously).

 However, about 2 months ago, i went to a concert and a crowdsurfer landed on me.. Also, i got kneed in the head.  And there were flashing lights. I didn't have any seizures that night, but the next day i started having them at night.  Usually, I can go to sleep after having seizures and when i wake up, everything is fine. But on that particular night, I was having seizures for about 3 hours, and everytime i'd fall asleep, a seizure(s) would wake me up.

 So maybe you're having seizures at night because of some sort of head injury? And there are many other things that could cause you to have a seizure even if you're on meds. Ie, drugs, alcohol, sleep deprivation, etc.

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