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Myoclonic jerks occuring in the evening?

Thu, 11/01/2007 - 13:10
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 passionlab on Tue, 2011-09-27 - 14:38
it is very hard for me to explain feelings to certain people.. if you ever want to talk about weird feelings you may get, we may have similar feelings and be able to talk about it, my feelings send me into temporary depression.SEO

Re: Myoclonic jerks occuring in the evening?

Submitted by izadreamer on Wed, 2013-08-07 - 12:20
Hi, Your post is nearly two years old so don't know if my response will get to you. Hope so! My son is on lamictal (a generic brand of same) and I was investigating the side effects. Two that concerned me were that it can cause brittle bones and also suicidal thoughts. I immediately started giving him calcium/magnesium, vitamin D drops, and 900 mg a day of St Johns Wort. Yesterday after a particularly tough seizure he didn't have the depression that usually besets him. I can't know for certain but he's been taking the supplements for about 4 to 5 weeks. My thinking is that it can't hurt. St Johns Wort is supposed to work as well as prescription anti-depressants and I'm thinking that might be true. This experiment is after many years of observing all the little quirks and events. Important tho'....you have to take the 900 mg and you have to take it every day. It isn't anything instant and my info said it would take 3 months for it to really have an effect. That said...he's going to keep it up! We're hopeful!

Re: Myoclonic jerks occuring in the evening?

Submitted by cynglassey on Wed, 2011-03-16 - 17:04

I think I have what you are describing.  I have intractible primary generalized seizures.  I found out when I wanted to change meds (from depakote because of PCOD), I was put in the hospital for the 72 hour EEG test (2002).  I was told I had so many seizures in the first 3 hours they quit counting.  I wasnt aware I was even having them, nor was my mother because I was having a conversation with her.  I was "hooked up" when it was time for me to take my meds.  First they put me on Topamax--it was horrible for me, it made my seizures worse and caused psychological side effects.  I was switched to Lamictal after 3 weeks, I also switched doctors because he wouldnt answer my question and wasnt responsive when I was having problems with my medicine.  Once I got on the Lamictal I sort of learned how to wake up.  Someone mentioned not hitting the snooze button-yep dont do it.  If you do you'll just end up having to go back and lay down until you feel like your nerves aren't jumping and you can actually pick up your toothbrush and toothpaste without dropping them.  It would also bother me if I was woken up tone.  For example one person could wake me up and it wouldnt bother me, but someone else waking me up in the same way saying the same thing would make me have JM seizures.

But to get to your point.  Practically the whole time I would have jerks in the evenings, the kind of jerks normal people have when they are almost asleep and wake up; legs and arms both.  I have never felt weird from them so I just didnt pay that much attention to them.  About 6 months ago I was at the doc for my check up and was going through the normal pre-appt stuff with the nurse and made the comment to her that I just had the normal jerks in the evening like everyone.  She looked at me asked a few questions and told me thats not a normal thing.

Since I already take 4000 mg Keppra, 900 mg, Lamictal and 500 mg Zonagran (all generic); the doctor and I decided to first try to switch around when I took my medicine.  Which has helped.

One of the things I cant stress enough to you in to find a neurologist (hopefully your already seeing one) but even better a neurologist specially trained to treat epilepsy.  Comprehensive Epilepsy Care Centers are the best places to go; there are only about 10-12 in the country (sorry I havent checked lately) so you may have to drive or have someone drive you; mine is 75 miles away.  But it is worth the trip.  I wouldnt trade my doctor for anything.  Not only does he actually talk with me, not at me, but anytime I have a problem his nurse or he personally gets back with me.

I hope this helps you.  I have a lot of different kinds of seizures, so the JM are just a small part of mine.  Feel free to contact me in you want to.

I think I have what you are describing.  I have intractible primary generalized seizures.  I found out when I wanted to change meds (from depakote because of PCOD), I was put in the hospital for the 72 hour EEG test (2002).  I was told I had so many seizures in the first 3 hours they quit counting.  I wasnt aware I was even having them, nor was my mother because I was having a conversation with her.  I was "hooked up" when it was time for me to take my meds.  First they put me on Topamax--it was horrible for me, it made my seizures worse and caused psychological side effects.  I was switched to Lamictal after 3 weeks, I also switched doctors because he wouldnt answer my question and wasnt responsive when I was having problems with my medicine.  Once I got on the Lamictal I sort of learned how to wake up.  Someone mentioned not hitting the snooze button-yep dont do it.  If you do you'll just end up having to go back and lay down until you feel like your nerves aren't jumping and you can actually pick up your toothbrush and toothpaste without dropping them.  It would also bother me if I was woken up tone.  For example one person could wake me up and it wouldnt bother me, but someone else waking me up in the same way saying the same thing would make me have JM seizures.

But to get to your point.  Practically the whole time I would have jerks in the evenings, the kind of jerks normal people have when they are almost asleep and wake up; legs and arms both.  I have never felt weird from them so I just didnt pay that much attention to them.  About 6 months ago I was at the doc for my check up and was going through the normal pre-appt stuff with the nurse and made the comment to her that I just had the normal jerks in the evening like everyone.  She looked at me asked a few questions and told me thats not a normal thing.

Since I already take 4000 mg Keppra, 900 mg, Lamictal and 500 mg Zonagran (all generic); the doctor and I decided to first try to switch around when I took my medicine.  Which has helped.

One of the things I cant stress enough to you in to find a neurologist (hopefully your already seeing one) but even better a neurologist specially trained to treat epilepsy.  Comprehensive Epilepsy Care Centers are the best places to go; there are only about 10-12 in the country (sorry I havent checked lately) so you may have to drive or have someone drive you; mine is 75 miles away.  But it is worth the trip.  I wouldnt trade my doctor for anything.  Not only does he actually talk with me, not at me, but anytime I have a problem his nurse or he personally gets back with me.

I hope this helps you.  I have a lot of different kinds of seizures, so the JM are just a small part of mine.  Feel free to contact me in you want to.

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