Tegretol and drowsiness

i've been on tegretol for well over 15 years now, for my Status Epilepticus (severe epilepsy). i was always on a small dose (600mg daily i think). but due to my epilepsy being poorly controlled, the dose got increased to 800mg - that was around 10yrs ago.

i am 6' 5", and used to weigh around 224 pounds. Since the dosage was upped to 800mg/day, i have gained around 84 pounds in weight, and have allways had drowsiness, lack of concentration, poor short-term memory, double vision and terrible balance. And still the epilepsy has been poorly controlled, still suffering petitmal and grandmal seizures.

So around a month ago, my neurologist was informed of my side effects becoming so severe. He told me they are "toxic side effects" of the tegretol.. Yet told me to increase the dose, by 200mg/day, increasing it every fortnight.

i.e. up to 1000mg/day, then 2 weeks later go up to 1200mg/day, etc.. he told me to keep doing this till i get to 1600mg/day. then possibly go as high as 2000mg/day.. !!

i have to tell you all, that since i started following his advice and increasing the dosage past 1000mg, i have felt absolutely terrible. I find myself needing over 13hrs sleep, then more sleep a few hours later. I also have difficulty reading (despite my eyesight testing ok), and unbearable migraine-style headaches.

at 30years old, my daily routine is not too good at present. And still no benefits have been noticed since upping the dose. On 13th October, i increase it to 1400mg/daily.. :(

I have been on Tegretol since 1999, 800mg daily (2 pills, twice a day, with food) to treat two grand mal and several petit mal seizures I had throughout that year. Since that time I've definitely noticed drowsiness initially, a lack of mental focus, loss of both long and short term memory (I can't remember a thing any more, so I have to write everything down within two minutes otherwise it's just gone) as well as occasional spasms of my right eyelid and calves. I get mild anxiety attacks when I forget to take my meds, so I'm afraid to totally go off it or reduce the dosage myself.

Good luck to everyone else dealing with seizure disorder / epilepsy.

- RQ, Vancouver, Canada