Re: How much tegretol is too much?
I need to add my 2 cents worth. I understand the above poster has a medical background in this area, but from a layman's point (who has dealt with this for the last 16 years as a parent and exposure to neurologists and Epi's), everyone IS different when it comes to the handling/threshold of meds.
Our daughter was 12 and was on 1,000mg (may even have been 1200mg) of Tegretol at a weight of about 115 pounds or so). She was on Tegretol for all of those 12 years (diagnosed at 9 months), with mixed results of control (Complex Partial and Simple Partial seizures). The medication ranges are just that, ranges set by doctors after finding what works best for "most" patients. Since everyone is different, sometimes (and quite often) a med dose can be inched up (with doctor's supervision) as long as there is no toxicity or bad side affects. (blurry vision, stumbling, speech problems, headaches, jitters, etc.)
It does at times, also indicate that the higher the dose, the med may be losing its effectiveness. After 12 years and the onset of puberty, Tegretol just stopped working for Katie. We then tried the Carbamezapine, TegretolXR, and Carbatrol, all in the same "family" of meds. No luck. Moved on to Depakote, Neurontin, Keppra, Lamictal. All within a 4 year time span. That is when we reached the end of our ropes and looked into surgery.
One year of medical testing, 3 board reviews (that many shared with me here), Katie ended up having a Left Temporal Lobectomy. She had MTS, Mesial Temporal Sclerosis. A shrinking of the left hippocampus (in her case). That area was removed and she is on one AED (Lamictal-monotherapy) and seizure free since her surgery June 7, 2004.
Not everyone is a good candidate, but if you have Complex Partial seizures, it is worth investigating. It is the most amenable type of seizure, when it comes to surgery outcomes.
Keep an eye on how you feel on the med increase, have your liver enzymes checked (sgot and sgpt, back in the day...they have new names now, but the same thing), and your med levels monitored. Our daughter was on 3000mg of Keppra at the age of 13. I thought that was ALOT, but she did well and the range is higher for that med. They are all different. Also, Complex Partials are the most difficult seizures to control, according to our Epi, and if you fail more than 2 meds there is only a 10-15% chance that any other or new med will work. You may need to consider dual therapy as an option. We didn't want to do it with our daughter, but we had no choice there for awhile.
Take care and hope you feel and do well with the increase,
Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.