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Myoclonic Seizures
Fri, 11/03/2006 - 13:07Hi,
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: Re: Myoclonic Seizures
Submitted by hmselby2 on Wed, 2006-11-08 - 12:29
Hi Daniella, you are the first person who has responded that has symptoms very similar to mine. I have gotten responses from a few people, and did some research on my own on the condition, and it seems to me to be pretty across the board as far as exact symptoms, which is why I wondered if anyone had a similar experience to mine. I was diagnosed with general 'seizure disorder' last June and at the time had had many different types of seizures including the myoclonic. Once I started on Dilantin, the other types of seizures stopped for the most part, but the myoclonic twitches continued. They got a little better for a while, but like you, if I take caffeine or am really tired they increase. They started out just in my legs- I would say probably my right more than my left, but they were not localized to just one. When I had my EEG it was the first time I had them in my face, but now the face seems to be the most popular location. I mostly wanted to inform myself because so far my doctor hasn't acknowledged that these "seizures" are part of my disorder, so at my next appointment and I need this to happen so I can discuss with her if this is something that we need to address with medication. They honestly don't bother me that much, but seeing as they are seizures, then they could be doing harm to my body that I am not aware of. What has your doctor told you about this? Would you be willng to tell me a little about your diagnosis, and how it came to be- what your initial symptoms were, etc.? I'm just curious to see how someone else's experience relates to mine. Hope to hear from you soon!
Heather
Re: Re: Re: Myoclonic Seizures
Submitted by scaramoche on Sun, 2006-11-12 - 19:34
Clonic-Tonic, Petit, Partials, Myoclonic........well were working on defining the rest. Makes for interesting visits to the Doc!
"Dont seize you might have an epiphany"
Heather,
Well I know exactly what you are going through :P, I have many forms of siezure activity lol, guess im a great research project hehehe. Ok I have myoclonic Seizures or "jerks" as one of my many nuero's called them. Simply put, if he/she doesnt directly acknoledge them there IS A DIRECT correlation between them and your other epileptic activity. With me, they are a pre-cursor to my Clonic-Tonic's. When I have them I know im at risk for a massive and painful seizure. And as with yourself and the other poster alchohol, caffiene, sleep(over and under for me) are triggers. Now wheather they trigger the myoclonic seizure or general seizure activity is another story. Simply put the myoclonic activity that occurs in us IS triggered by patters in that "GRAY MATTER" between our ears, and I have seen MY myoclonic jerks triggered by seizure activity on an EEG. SO if youre Doc does not listen to you, push him, if he/she continues to be stubborn, get a second opinion. Take it from me, they are not there to do you favors, it's there job, and part of it is to research all data. As for harm, Im not sure, does throwing my latte(decaffe) on myself count? I generally dont have deja vu much to warn me(occasionaly i do)when the grand mal is comming, and smell even less frequently, but I can always, count on my myoclonic jerks to warn me. Either way, I know i ramble a bit, but Your not alone with the myoclonic activity coupled with other seizures.
Cheers
Frank
Re: Myoclonic Seizures
Submitted by DaniellaMT on Tue, 2006-11-07 - 14:23
I have Juvenile Myoclonic Epilepsy, so most of what I have are myoclonic seizures. Mine aren't anywhere specific, so it is not weird at all to have them in multiple places. Mine have been better lately, but before I started taking Depakote I would have between 10-200 a day; I was constantly "twitching." Caffeine is a MAJOR trigger and sends me into horrible spells. Being tired is another trigger; if I don't get enough rest at night I am almost guaranteed seizures the next day, and I am most prone to have them late at night when I am tired or early in the morning when I don't want to wake up. There is a lot more to know; if you ever have questions just ask.