Anyone know about myclonus?

[lindsayschu2]

I had a fun couple of nights and want to know more about myclonic epilepsy. I have this thing I thought was handled, but apparently not. I jerk around in a convulsive way, abdominals, hips, thighs, feet, toes, mostly from the waist down, only when I'm fully relaxed. It usually is in complex and sometimes repetitive patterns, both sides at the same time. It isn't only when I'm about to fall asleep--I lay fully awake waiting for it to stop, but it is also going on every time I wake up and in the morning, and who knows, probably all night. It started again in force now that I have hit 300 mgs of Lamictal two days ago, which I know is well documented for aggravating myclonus, and gabentin made it go wild as well, also known for causing myclonus in some people. I'd like to hear from anyone with myclonic epilepsy and hear if that is what this sounds like. I did not do this particular thing during my EEG so it has not been diagnosed, only my other seizure types (temporal lobe epilepsy, and I have SPs, CPs that can generalize but only did once). I don't have a neuro until May 28 and they can't get me in sooner, so no I can't call a doc, and I dropped back down in Lamictal and raised Topamax slightly, and please don't yell at me for that but this is scary (I know my serum levels and all blood work is good and have LOTS of room to increase Topamax). Thank you!

 

[masterjen]

Myoclonus is common in people with epilepsy, even if they do not have diagnosed myoclonic epilepsy per se (eg. JME). Other neurological disorders can causes myoclonus as well, like Parkinson's, MS and Huntington's. Myolonus does not necessarily originate in the brain (like in JME) and can originate in the spinal cord as well.
Chances are better than not that yours is due to epilepsy, but even if the symptoms go away by the time you see your neurologist still make sure to mention it since myoclonus can come and go.
I have mycolonus as well as myoclonic seizures, and 99% of the time they are in bed. I have other neurological issues besides seizures, so my case is less clear-cut. The neuro. feels when I have very strong "jumps" of my torso or both shoulders or both hips, for example, that those are seizures. But I also have more minor jumps where just my foot kicks out or one arm or hand, and these are more like myoclonus in my case.
I, too, found lamictal aggravated the myoclonus, and I don't blame you for backing down on it considering you had a second med. as a back-up. Just to be safe, though, you may want to let your family doctor know you did this so at least some medical authority knows. For me Keppra helped the myoclonus tremendously, and I didn't need to be on a very high dose (only 1500 mg) for benefit to occur. Sodium Valproate (valproic acid) also helps with myoclonic seizures (as well as other seizure types) but I'm not able to take that one so can't give you feedback about it.

 

[lindsayschu2]

My previous neuro thought that Topamax was the solution for the jerks and they were pretty much gone for the past 5 months. I've never had it this bad and the two nights I've been jerking (verging on convulsing at times honestly) my way through the night were the two nights I've been on 300 mgs so it's no coincidence. I'm a little worried about dropping down on any med but they really felt like seizures to me, and they worried me even more. Thanks Jen!

 

[masterjen]

Mine will typically get worse around the time of a seizure (tonic and/or complex partial), but can seem to flare up at other times too. I can also have a few nights in a row where it is an issue, then it disappears for a couple of weeks only to come back again. Some contributory factors I've considered as playing a role are excessive physical activity (esp. an overly strenuous work-out), prolonged very concentrated activity where I need to be in good control such as during a video game, and insufficient food intake (ie. a snack before bed seems to be helping lately, but maybe the myoclonus just happens to not be active right now). I also think time of the month might play a role, too. These potential triggers are not consistent though, and because myoclonus can come and go it can be very difficult to determine triggers.

 

[lindsayschu2]

Yeah mine have always been worse when I'm having other active seizures, or medication related (gabentin and now lamictal) or ovulation. When I was younger, marijuana did it too on occasion. I had no idea at the time they might be related to seizures and actually thought they were amusing--it was mostly my feet and toes and my toes would do these complex patterns and move independently in ways I could never do consiously and I thought it was funny

 

[masterjen]

I had no idea at the time they might be related to seizures and actually thought they were amusing--it was mostly my feet and toes and my toes would do these complex patterns and move independently in ways I could never do consiously and I thought it was funny

I know what you mean - I can't possibly begin to control each of my toes individually and consciously, but sure enough they would move independently on their own!

 

[AndrewIrish]

I have JME... Keppa and Valproic Acid is gonna be your best ticket with some nice benzos such as valium or klonopin thrown in for good measure.... my jerks occur all throughout the day... they have triggers... conversation, wanting to simply move, coordination... mine is classified as 'action myoclonus'... my upper body moves... i 'smask computer mouse' a lot cause my arm flips up and I lob it into the table... i almost go into convulsions sometimes... mostly arms and upper body...

excerpt from Fact Sheet:

What are the types of myoclonus?

Classifying the many different forms of myoclonus is difficult because the causes, effects, and responses to therapy vary widely. Listed below are the types most commonly described.

Action myoclonus is characterized by muscular jerking triggered or intensified by voluntary movement or even the intention to move. It may be made worse by attempts at precise, coordinated movements. Action myoclonus is the most disabling form of myoclonus and can affect the arms, legs, face, and even the voice. This type of myoclonus often is caused by brain damage that results from a lack of oxygen and blood flow to the brain when breathing or heartbeat is temporarily stopped.

http://www.ninds.nih.gov/disorders/myoclonus/detail_myoclonus.htm


If you can get Piracetam, get that.

 

[lindsayschu2]

Thanks Jen and Andrew--I'm good. I dropped down from 300 to 225 mg of lamictal and raised Topamax by 25 mg that did the trick--only the most minor twitch or two last night. No question it was the lamictal.

 

[masterjen]

I'm so glad you found the solution