I am pretty impressed. I had another EEG this morning before work and the doctor called me at lunch with results. That is a pretty good doctor in my opinion.

The results naturally were, "you have epilepsy".

I told her that I knew that already and she knew that already because this was my 3rd EEG and I had a 4 day VEEG before. I asked if that was the purpose of the EEG. Because my understanding is that JME doesn't go away.

Yup. That was about the whole purpose of it.

Was it the Dr. or the insurance co. that ordered the unnecessary test? I'm betting on the ins.co., lol

But I guess I'd rather have too many than too few. I was having seizures, my doc ordered an EEG. The neuro said "yep, you have epilepsy, take this phenytoin", and that was about it. I have NO idea what type it is, what kind of seizures I am having, nothing.

The phenytoin is controlling the seizures hubby and I call "the floppy croppies"... but something else is happening, maybe you all can tell me what it is. I am "nodding off" all the time. I don't feel sleepy, and when I go lie down, I don't fall asleep. But I'll be sitting on the couch, watching t.v. or talking to hubby, and the next thing you know my head is hitting my chest. I pop right back up, but it still bothers me that it's happening. Any ideas?

Thanks in advance for any help.

I am not sure. My guess is that it could be the medicine just as easily as the disease. I have found that the side effects of most of the medications are nearly as bad as the seizures themselves sometimes.

Dilantin (another name for what you are on) can cause this:

Ataxia: Wobbliness. Incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb movements. Ataxia is usually a consequence of disease in the brain, specifically in the cerebellum which lies beneath the back part of the cerebrum.

Does that describe what is happening to you?

Yes, that is happening too. But I expected that, was already having problems with balance because I have rsd and aids, as well. I'm on enough drugs to choke a horse! (I have used several drug interaction programs to check things out, trying to make sure it wasn't caused by that. But I can only figure out so much on my own.)

These little "episodes", though, are weird. I am conscious that it is about to happen, most of the time. The few times I wasn't aware were bad news... I have hit my head several times. They never happen when standing, only while sitting. The ones where I hit my head were in the bathroom, sheesh... lots of sharp corners in there.

I know the answer is to get back to the neuro, and demand a better explanation... but it's hard to do when you are on Medicaid. Plus, because of the other health issues, no one wants to say that any particular problem is caused by any one of the diseases.