Hi. First timie posting here.

I am 51 and have had JME (juvenile myoclonic epilepsy) since I was 16. It's been more or less successfully controlled, with a few mishaps here and there, but nothing to really worry about. Until this week.

My neuro had increased my Dilantin from 300 mg a day to 400, and a couple of weeks ago I got sickeningly dizzy and stayed home from work. Dr. advised to cut back to 300, which I did. Only thing was, a couple of days after that, I started having myoclonic jerks late in the afternoon, which had never happened before. So I went back to 400 mg Dilantin.

Then this week the dizziness suddenly returned. I called into work and was going to call the dr. for an appointment when the strangest and most frightening thing happened. And I am not exaggerating how scared I was.

My right arm just suddenly started flailing about uncontrollably, like a deflating balloon just spazzing in the air. It did this so hard my body was shaking BUT IT WAS NOT A JME SEIZURE. I want to make that perfectly clear. I was completely conscious the entire time, had no other complaints other than the dizziness and the arm stuff. then the left arm would do it. I couldn't control it. If I tensed my arm muscle, it only made it a little less ... and then my muscles would hurt. Naturally I was scared out of my wits.

I had two cat scans (both negatives for any abnormalities) and an EEG. I see my neuro this week for the results. Oh yes ... my Dilantin level was 23, when it should be 10. Needless to say, I'm off work for a few days and can't drive until I see the dr.

Any ideas what it might be? I'm thinking maybe either another side effect of Dilantin toxicity or perhaps focal seizure. Or it could be something far, far, far worse.:(

I am very worried about this.

Normal dilantin levels are 10-20, so yours was slightly high, but I wouldn't think high enough to be the cause- people can be dehydrated , and have "concentrated" levels return on lab reports, that aren't really accurate because of the dehydration. It could be a simple partial seizure; I'm doubting something worse since your scans came back ok. Maybe just a fluke thing. What did the doc say?

Hi, I'm a newbie too. I have a ques.
I've never heard it and was curious, what are myoclonic jerks? Thanks. :)

Isolated muscle jerking- kind of like when you get an eye twitch, or can also happen in larger muscles- can be once or repetitive.

hi- I can share wuth you one the jerks. I akso have JME. One of the types of seizures experienced is when you are fully conscious and your upper body will usually jerk (involving your arms jerking upward for a few seconds.) If it is a strong one and you are holding something you might be inclined to actually drop it. I know that if you are not getting your proper amount of sleep with JME you are more inclined to experience these types of seizures. and yes they are siezures. They are partial seizures. usually they only affect the upper body but if they are really stong they can actually affect not just the upper portion of your body but also the lower and your legs mightjust give out from under you. It is vital that with JME as with mist other types of epilepsy that you get minimal of 8-10 hours of sleep and never drive under 6 hours of sleep cuz you are putting yourself at serious risk as well as others. you may have a grand mal or experience a bunch of partials like the one you described on limited amount of sleep. also as you probably know severe stress can cause them too. That is almost impossible to avoid though. I can't stress enough though that you must get your proper rest and if you do have a partial you need to sit down and relax and maybe force yourself to take a nap if possible. If not you need to make sure you make others aware that you had a partial seizure hand to keep an eye on you. If at work for example tell the people around you to watch you or if possible go home early and go to bed for a few hours and more than likely you won't have anymore for the rest of that day. If you do than you need to discuss this with your doc. because this means you haven't found the proper dose yet for your meds. & it needs to be raised a bit. Remeber JME usually represents having (3) different types of seizure and that is one of them. Usually it affects only the upper body and causes the arms or arm to jerk in an upward motion and you might sort of black out for a 10th of a second if that in that its more like you blinked. You are fully conscious and aware that you had it and sometimes others around you won't even realize you just had one. You know though. The other type besides the big one (grand mal) is when you are staring off into space and are completely conscious and aware that you are doing that too. This one you can usually pull yourself out of. it doesn't usually last but a few moments and if someone notices it all they need to do is say your name to pull you out of it or run there hand by your face to get your attention. You can hear everything around you. The closest thing I can compare it to is when you first wake up in the morning and your still tired and you are staring off into space. It's kinda like that but you have been awake for hours. Again - with this type of epilepsy - you really must take care of your sleep patterns. Get your 8 hours in minimum. Take Care.

Toolfan

Hi, I have a question? I have a 9 1/2 month old. He has the grandmal seizures. They just started him on keppra on Nov 4th. But I have noticed that now his arms will give out on him and when he is crawling he falls face first. Is this from the keppra? I have also noticed that he has done the arm jerking thing too. Is that a form of seizure? I called the DR. and he said to just lower the does of keppra but he is also on topamax and tegratol.