Epilepsy & Seizures Support Group

Hi Kelly.
Hmm. personaly I do not find anything "boring" about having epilepsy. Nor a seizure of any kind.

I am concicious during mine also.

I would question a Dr. saying any kind of seizure disorder is boring, since seizure disorders can change, and effect each person in a different way! I would imagine this is not a neurologist or epilepsy specialist who said this--so I would get yourself to one of those.

I have complex partial seizure disorder, and I do also have simple partials as well. I do have periods of time where I get shaky as well, though it is typically just my arms. I am surprised that you would shake from head to toe for that period of time. What tests have been done, and what has been prescribed for you?

I would caution you not to take baths anymore during these episodes.

Yes, he was a neurologist; in his defense I think he was trying to put some perspective on the situation. He wasn't trying to be flippant, although I think rereading his statement out of context does sound callous. Thank you for your replies...I'm really glad I found this site. As for the baths, they seem to help me relax and calm the shaking (somewhat). I know what you're talking about though. In a tub of water is the last place I'd want to be during a seizure. race121--I have had an eeg and will be having an mri soon. I thought the same thing myself when these episodes first started happening. They do last a long time, not very fun. 1st neuro didn't prescribe me meds bc I wasn't sure these were siezures when I left the appointment. Second neuro, with whom I only talked to over the phone, said he would prescribe Lamictal or Trileptal but my office visit isn't until the 22nd. Are your seizures controlled?

Glad your neuro has a sense of humor! Some of them can be so "high and mighty"!

anyone ever met a dr, or neuro who had epilepsy?

Kelly--to answer your question--no my seizures are not controlled. I went undiagnosed for over a year due to other medical problems-we assumed the seizures were related to that and not seizures at all. I am now on 2 meds (And tried others) and still have several seizures a day..

My son has SPS and CPS. he shakes with them also, more like a shivering when you are cold. No meds have worked for him but we find if we give him drink of juice or a snack (with sugar) he comes right..could be something to do with glucose...brain stuff..you know. Try it and see if it helps..I swear by it with my son.

4jakeb>> I also have/had problems with my bloodsugar. i would have convulsions from my sugar dropping. i would shake and drool. Not a pretty site. Kind of a double whammy for me. Seizures and Convulsions. But i have my diet more regulated, and my seizures more under control.

I have partial complex seizures. I don't do the shaking thing... for some reason, I prefer to just lock up. What ever position I am in, that's how I'm gonna stay til it's over. Like a statue.
You're right, it's hard to get your head around when you first get diagnosed. On good days, I still have trouble with it. I feel so... "normal". Like normal even exists.
The best part of not having tonic clonic seizures is not falling down and endangering yourself. I understand what your doc meant and I'll take boring!!!!