[teresakoch]

Originally Posted by WornOutInKansas

Right now my only medication is Mestinon. If I don't take it, I'm practically useless. If I do take it, I'm ready to vomit at any given moment. I've tried it with food, with milk, before bed, etc., and it doesn't seem to make any difference when I take it. Doc increased my dosage since my disease seems to be progressing, and it helps with the fatigue, but the side effects are awful, as many of you know.

How much Mestinon are you taking per dose, and how often? My understanding is that we need to find a dose that doesn't make us feel sick. It's possible that instead of needing to increase the amount that you are taking per dose that you need, instead, to change the INTERVAL at which you take it. It may also be possible that you need to increase the dosage by less than what your doctor gave you - perhaps you only need 15 or 30mg more per dose rather than 60mg per dose. It's an extremely delicate balance.....

My case is a bit unusual because I didn't test "positive" on any of the tests (one result was "iffy"), but my doctor was willing to let me do a medication trial. She had me start with 30mg once a day for 3 days, then 60mg for 3 days, then 90mg for 3 days, then 120mg for 3 days. She said that if I took too much, I would know it.

Sure enough, at 90mg I could tell a real difference, but at 120mg, I felt queasy, I started drooling excessively, and I just felt lousy in general. Once we had the correct dosage determined, we moved on to figuring out what "timing" was right. For me, it worked out to be 90mg every 4 hours while awake, and then at night I take 1 timed-release capsule.

If you are feeling that bad on the new prescription of Mestinon, chances are your dosage is too high - what you are experiencing may be symptoms of an "overdose". If you've ever sprayed an animal with too much flea spray, you've seen the same type of overdose - particularly the drooling!

Talk to your doctor and see what he/she thinks, but I'd be willing to bet that you can tweak your dosage/timing schedule to find something that works best for you. It may take a couple of weeks to find the "best fit", but it sure would be better than feeling so sick all the time!