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Myoclonic Seizures

Fri, 11/03/2006 - 13:07
Hi, I have been trying to learn more about the myoclonic seizures that I have been having. It took me a while to figure out what they were, especially since my doctor is always trying to tell me that they aren't necessarily seizures. But here is the thing: they started when I started getting seizures (about 6 months ago) and they lessen or worsen in direct correlation with my seizure symptoms. It started out as a muscle twitch/jerk in my leg when I was resting in the evenings, and I would occasionaly get them in my face when I was trying to go to sleep. And the more tired I am, the worse, more frequent they are. However, I started taking a supplement recently that had caffeine and ginseng (which I have now learned can be triggers) and the twitch/jerks have gotten much more frequent and pronounced. I get them all the time now, but mostly in my face. Isn't that weird? Will they just continue to migrate around my body? Obviously I stop taking the supplement but the whole experience has been enlightening. Does anyone else have similar symptoms, or experience myoclonic seizures? I am curious to know what other people's experiences with them have been.

Comments

Re: Myoclonic Seizures

Submitted by tracy05 on Fri, 2006-11-17 - 11:31
My sleep has been off for so long that I am tired all the time from the seizures. I might start with leg jerks when I lay down. I then have twitches in my face--usually my lip jerks upwards one the left side. They progress as the night goes on into entire body jerks that wake my husband and sometimes me. My husband says I groan and make all kinds of scary noises---he even says I talk in another language. He also told me that when he tries to wake me up it takes a long time to get me awake. I never have any memory of him waking me. Sometimes in the morning my body is so sore, I have bitten the inside of my mouth or tongue and I cannot wake up no matter how much I try. The good news is that I changed my medications yesterday and hope that might make a difference for me. Hope some of this information helps you!

Re: Myoclonic Seizures

Submitted by Gina Marie on Fri, 2006-11-17 - 14:42
This is an interesting topic for me to read. I get twitches in my face and right hand mostly, before I get a tonic-clonic seizure. Usually the day before is full of twitching activity. If I listened to it more maybe I'd stop the grand mals. I don't normally drink coffee anymore, but the day before yesterday I'd had 3 or 4 cups through the day and almost no sleep the night before. Another thing for me to watch. Ginseng can trigger seizures?

Re: Re: Myoclonic Seizures

Submitted by hmselby2 on Tue, 2006-11-21 - 15:39
I have a friend who has epilepsy also, and he has told me that caffeine and ginseng are both triggers for him. But that is not necessarily true for everybody. I don't drink coffee often, and the caffeine in sodas is not enough to affect me, but when I took a suplement that had a higher amount of caffeine that is when the myoclonic jerks increased in frequency. My meds control grand mal seizures for me really well, so these myoclonic jerks are the only ones that I am having trouble with right now. I wonder if I might need two different types of medications. I have an appointment with a neurologist coming up, so I will let you know if i learn anything! Heather

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