Hi, I am new here.

An intro, and some questions.
I am 27, live in Oregon, and I enjoy reading, bicycling, cooking, and drumming among other things.
I had my first grand mal that I know of at age 15 while standing in the kitchen. I had an EEG and was diagnosed with epilepsy. It was noticed that I was frequently having petit mals as well, and I was put on medication for my seizures. They moved me from med to med, and finally settled on Tegritol, because it at least seemed to have some effect, while the others did not seem to. I no longer take prescription medication for my seizures, but I do self medicate with marijuana, which works well for me when nothing else did. (sorry if that is taboo here) Has anyone else tried this and had favorable results? I only smoke 1-3 times a week, and it keeps my grand mals to one a month or so. If I quit smoking, as I have for the past 3 weeks (job hunting) I start, after a couple of weeks to have them, until after a month off it I have 3 a week or so. I am wanting to get away from medicating in this way, I do not really enjoy it anymore. It has become more of a chore and drain on my resources, and I need another way to stay functional. The whole waking up feeling like I got hit by a train thing appeals to me even less though, so I still smoke, when I am not job hunting. Does anyone else have any suggestions, (other than the fat diet, or Atkins) such as herbal remedies with which I might find some relief?
I have my seizures during my sleep, the grand mals at least. They pull me out of my sleep somewhat, and I can feel my body convulsing. Typically it is the upper half of my body that convulses, but occasionally it is full body. Really freaked out my last girlfriend, even though I made sure to discuss it with her before I ever slept with her, just so that she would know and be prepared. I have not had one while awake that I know of in 6 years, though I do still have petit mals fairly frequently, but I do not know that I have had one of those unless I notice the missing time or someone else notices that I was not there for a few. I have automatisms sometimes, just an involuntary twitch, usually arm, once in awhile, especially while dropping off to sleep, my entire body will jump really hard. not sure what that is, or what it is called.

Anyway, that is me, any questions, comments or help are welcome and appreciated. :)

Post Edited (Gnome) : 12/23/2005 2:09:07 AM (GMT-7)

Gnome said...
... Does anyone else have any suggestions, (other than the fat diet, or Atkins) such as herbal remedies with which I might find some relief?

Hi Gnome, welcome to the forums.

I don't have E, but my wife does.  Her seizure patterns have been all over the map in the 11+ years that I have known her.

She did manage 4 glorious years of complete seizure control without any medications with a diet and sleep regimen and 5-6 months of EEG Neurofeedback treatments.

Although her grandmal seizures, jerks and, for a brief time, drop attacks returned after giving birth to our first child, the absense seizures never did return.

I highly recommend trying it out if you can find a doctor (most likely a psychologist) who is competent in your area.

Also, are you taking any vitamins or supplements?  I know several people who have found specific supplements to help reduce their seizure activity.

Do you keep a seizure diary? With my wife, her seizure threshold is affected by her diet, sleep patterns and (of course) stress levels.  If she doesn't get 9 hours of sleep regularly or eats too many simple sugars, she has trouble.  Alcohol and caffeine are big no nos for her - they usually mean a seizure within 24 hours.

HTH!

Post Edited By Moderator (Admin) : 3/2/2006 9:24:01 AM (GMT-7)