Hello everyone! I discovered this board while trying to obtain some research data on Phenytoin (more on that in a later post). I am relatively new to message boards but it sure sounds like a great idea that i could converse with people who know and understand what its like to live with epilepsy.
I am a 45 year old male who was first diagnosed with a 'seizure disorder' when I was nine. I took phenobarbital as a youth, then switched to dilantin, which I have been taking for the past 20+ years.
I have what I refer to as auras (partials) which may or may not evolve into a grand mal seizure. In some ways, this gives me the advantage of warning me in advance. I am fully aware during the aura and it usually lasts for about one minute before it either goes away or I go belly up. Too often, I convince myself that it will not evolve and I get myself into trouble.
The one other big advantage of the advance warning (aura) that I receive is that it gives me time to hide. I think some of you may understand what I mean here. Not only are the grand mal seizures embarrassing, I've even once been taken to a hospital and had my stomach pumped! Young kid, long hair, totally wacked out...must be an overdose.
Over the past two years, my seizures have gottn worse and I have been involved in a few bad accidents. As such, I went to a new neuro and am now also taking zonegran (400 mg). That, along with the dilantin (400) seems to have helped a lot.
Ramble, ramble. I look forward to conversing with you.
I can remember when I was a kid I used to say that my (left) hand was asleep. As if you slept with your foot up in the air all night. As I got older, a dull ache began appearing in my left shoulder area.
The "aura" comes out of nowhere, lasts for about one minute, and does not evolve into anything else about 80% of the time. I will have auras from exhaustion, stress, anxiety, etc.
One thing that I do, and it seems to help me even though I have no idea if there is any "medical" basis for it, is I roll my shoulder and run my left hand under warm water. I've been doing the left hand under warm water technique for years...it seems to help, even if only pshchologically <sp>.
Nice to meet you Kipp. Sam has the hand asleep thing at times too. WIll mention the water trick to him. His are partials when this happens, sometimes generalize but usually do not...
Hope the Zonegran helps. It did some with Sam at low doses...
mom of 2 teens who have battled seiuzres.