WHY Do I convulse around!??

[lindsayschu2]

I've done so much reading and can't figure out what is going on. I have temporal lobe seizures--complex partials and simple partials. Recently, I have these movement seizures, mostly as I'm falling asleep or in my sleep, but in the evenings as well. They are like myclonic jerks but can go on and on for 5 minutes, and my legs and lower body are jerking around. I'm totally conscious but not in control of these complex movements. I hardly ever sleep and it's killing me, my neuro has only said 'could be complex partials' but they haven't responded to increased meds. Any ideas????

 

[Cint]

I have temporal lobe seizures--complex partials and simple partials. Recently, I have these movement seizures, mostly as I'm falling asleep or in my sleep, but in the evenings as well. They are like myclonic jerks but can go on and on for 5 minutes, and my legs and lower body are jerking around. I'm totally conscious but not in control of these complex movements. I hardly ever sleep and it's killing me, my neuro has only said 'could be complex partials' but they haven't responded to increased meds. Any ideas????

It sounds like myclonic seizures, not CP seizures. If it were CP, you wouldn't be conscious and would not remember what was happening during the seizure, although you don' actually pass out. One may look "spaced out" during a CP.

Your neuro needs to keep searching for a med that will control these type of seizures. It took me trying 10 meds + surgery to finally get control of my CP seizures.

 

[lindsayschu2]

I was reading about myclonic seizures and it seemed like those were one brief, sharp movement, does that sound right? Mine are complex--they might start with my toes, and then my legs, then my abdomen, everything moving in sharp jerky, sometimes complex movements, then a pause, then starting again, sometimes for many minutes. Thanks much for your reply, I'm getting frustrated

 

[arnie]

Maybe Jacksonian seizures?

 

[Cint]

I was reading about myclonic seizures and it seemed like those were one brief, sharp movement, does that sound right? Mine are complex--they might start with my toes, and then my legs, then my abdomen, everything moving in sharp jerky, sometimes complex movements, then a pause, then starting again, sometimes for many minutes. Thanks much for your reply, I'm getting frustrated

Myclonic seizures may be brief, sharp movements that occur many times in just a few moments.

http://www.epilepsy.com/epilepsy/seizure_myoclonic
They're very brief jerks. Usually they don't last more than a second or two. There can be just one, but sometimes many will occur within a short time.

Complex partials are complex, also, but not necessarily jerky movements. Just a lost, "nobody home" look and picking at buttons or clothes, chewing, or nodding of head and needless humming or not making any sense when spoken too. They usually last 2-3 minutes and when coming out of it, will remain very tired for hours. Usually the person doesn't remember any of it.

It could be a simple partial seizure, since you're aware of what is going on.

Check this website that describes seizures:
http://www.epilepsy.com/epilepsy/types_seizures

 

[lindsayschu2]

Thanks guys. I do have deja vu type simple and complex partials as well and had one grand mal, but this wildly sleep-disruptive type is totally new after 30 years of epilepsy--I was hit last January from behind by a drunk driver (pretty significant concussion) and this could be related. My neuro suggested it was another type of complex partial but it just doesn't add up! So glad I found this forum, glad to have others who know more about this than me.

 

[Nakamova]

Hi lindsayschu2, welcome to CWE!

I think it doesn't matter so much whether your myoclonic seizures are partial seizures or distinct from them -- the main thing is to find a way to get them under control. Since they began after a traumatic car accident, they may be subcortical or spinal myoclonus, which are more likely to respond to clonazepam (Klonopin) than traditional anti-seizure meds (though Keppra helps in some cases).

You might want to try taking a magnesium citrate or magnesium taurate supplement with dinner or before you go to sleep. Magnesium plays a role in muscle relaxation (as well as brain health), and can also help with sleep. It might not get rid of the spasms altogether but could potentially help reduce them. Worth a shot.

Best,
Nakamova

 

[lindsayschu2]

Nakamova, I'm on both Clonazepam and Topamax. How much Magnesium can I get away with taking? I had an MRI today, maybe that will tell me something? Thanks!

 

[Nakamova]

With any supplement it's best to take no more than the recommended dose, and it can't hurt to start a little lower to see how you feel. I take 125mg twice a day. Generally with magnesium you know you're taking too much if you get the runs.

 

[lindsayschu2]

Nakamova you have really hit the nail on the head I believe!! I read about myclonus last night, and spinal myclonus exactly describes what is happening to me, everything from it only happening at rest (mainly right before sleep) to gradual onset to restricted to the waist down. Thank you--I'm going to talk to my doctor about this since my current protocol isn't controlling it.