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hmselby2

Myoclonic Seizures

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

Hello.....

My name is vinod, I''m too suffering from a type of seizure disorder from two and a half years. My type is quiet different, i.e, my brain gets seized for 5-10 mins. and during that time my relatives say that I'll make a bad type of crying sound and i dont come to know about these all things. After 10-15 minutes I'll wake up and i'll become normal. After this thing happens i'll have bodyache for 2-3 days. We cant say when it may happen i.e., sometime often in 1-2 days and sometime after a long gap of 6-8 months.

Vinod.

Re: Myoclonic Seizures

Hi

I have Segmental Myoclonus which just involves one leg. There are many types of Myoclonus including facial, palatial etc. Epilepsy and about 8 other diseases can cause the twitches and jerks. I can go to seizures if I don't take my meds. I am on Keppra and Klonopin right now and have been on Depakote in the past. You might want to search Myoclonus on the Web for more info.

Good Luck

Re: Myoclonic Seizures

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.

Re: Re: Myoclonic Seizures

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

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

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

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

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

Re: Myoclonic Seizures

It has been a while, any updates on your condition Heather?

Re: Re: Re: Myoclonic Seizures

Hey Heather
According to my PharmD caffeine is a big "no-no"...especially coffee and soda pop! I take 4 meds to control gm seizures and watch my caffeine intake besides. If you even THINK something is acting as a trigger I recommend cutting it out if you can for a while to see if it helps, I've learned the hard way but am finally learning! Good luck!
Poodlelover