OK, time for a report on yesterday's visit to the epileptologist: As y'all know I've been having problems with discomfort, hoarseness, choking (mostly on liquids) and, worst of all, increasing sleep apnea. I've been turning the vns off at night so I can continue to breathe!
I told all this to the doc, and she was kind of discouraged at all the side-effectsm as well as the fact that I've had more seizures in the past three months than I did in the same period last year. I told her about increasing my Lamictal from 400 to 500 mg. per day, and spreading it out more (1 at 0600, 1 at noon, one at 1800 and 2 at bedtime) to see if that would help with the extreme tiredness that has always come on when I've tried to increase the lamictal. I think it has helped, actually, because I've felt fine for the past few days and the exhausted feeling usually hits immediately.
As for the vns, she lowered the setting from 1.25 to .75, which is kind of a step back, but if it helps my body get used to it, allows me to leave it on all the time, and eventually lets us increase the current to therapeutic levels it will be worth it.
I told her I really don't want to try any other meds right now because I have had bad luck with them in the past. Lots of side-effects and no seizure reduction. She is in agreement with me that I try this for at at least a year or 18 months, but she said that if we don't get any reasonable results she will push me to consider surgery. I don't like the idea of that, but I guess I will cross that bridge when I come to it.
The good news is that most of the unpleasant side-effects seem to have diminished, and apparently I had no sleep apnea or weird breathing noises last night, so I won't have to worry about turning it off.
I'll be seeing her again in early July, unless something dramatic happens and I have to call sooner. I can't see that happening, but, as we all know, you can never be sure just what is going to happen with epilepsy!
Carry on!