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Myoclonic jerks occuring in the evening?
Thu, 11/01/2007 - 13:10Comments
Re: Myoclonic jerks occuring in the evening?
Submitted by izadreamer on Wed, 2013-08-07 - 12:20
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.
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