[Newbie87]

you need to tell your boss!! that is a must! i am at this very point. i think this week might be my last week at work because i can't seem to get caught up with my fatigue. i tried hiding it tho and everytime my boss asked me how i was i just said okay until the other day i just broke down. said that i was not okay...that i wish if i saw it enough that it will be true but that at this point i am not sure if i can do my job to the best of my ability and that really bothers me. We had a long talk...he told me that i need to take care of myself now because i am going to look back and wish that i would have not tried to fight this disease so hard and learn to just deal with the limitations and change things and who knows if i take time off if maybe in a month or so id be able to come back to normal because i took the time off...you need to listen to your body and take care of yourself....hard as it is...hope all works out with you..and you get some rest and feeling better!

[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!

[Tbarney]

I am a high school teacher and teach full time. I use the summer to RELAX. I am VERY tired after a day of teaching standing on my feet without airconditioning, sometimes in 100 degree heat. I have fans blowing on me. At the end of the day when it is really hot I have to come home and take a nap. Due to teaching and being worn out, my husband does the majority of the household chores and I run the kids around to their activities.