Annie,

My husband has many of the same issues w/ the Mestinon. I wouldn't recommend Immodium - he took it once when we were going to be somewhere that wasn't conducive to quick trips to the bathroom. It worked, but later that night he had SEVERE cramps, so bad I almost took him to the ER. He's had pretty good relief using probiotics but check w/ your neuro & get the good ones - not the stuff they sell at Wal-mart!

Good luck - Alison

Sometimes 1/2 of a tablet of Imodium (1mg) works for many situations. I think some people may become constipated on the suggested doses.

I have a congenital GI defect that sometimes makes me very ill...and I have found 1/2 Imodium is plenty for me!

It is also a good idea to try 1/2 tablet if you are 50 or over.
Older patients are more sensitive to drugs.

Annie, have you been tested for Celiac Disease? If you have and you had a negative result, you may still be gluten sensitive. Try a gluten-free diet for a month and see if that helps. A GF diet will also help get your vitamin and mineral levels back in line, as an internal reaction to gluten will cause the lining of the intestine to be unable to absorb all of the nutrients that you eat.

I've checked with the Mestinon manufacturers, and they assure me that they don't use gluten in their formulation, but I started getting body sores again (I have the skin manifestation of CD and am also allergic to wheat), so I'm wondering if they might not use wheat in some other part of the facility, or if it is somehow in the dessicants that are included in the pill bottles. I'm still investigating all of that, so I'll get back to you when I find out more....

You may also be taking just a slight bit more than your body needs, and you may be having a mild cholinergic reaction. It's possible that you need to take a smaller dosage; you may be able to offset that by taking it more often during the day. I seem to remember reading that works for many people.

About Dosage and celiac. I was tested for it back in 2005. The tests was negative. But when I was getting worse and having trouble getting groceries I went some time without my favorite breakfast of wheat toast with peanut butter. At some point it became clear that not using that bread as a big source of my daily food had me some better. At this point I have to focus on getting this new neuro to work out so she puts in place better treatment cause I am so much worse including my breathing. Just a long phone conversation can get me into big trouble these days.

I am working with local family doc who is from Asia who practices acupuncture as well. He is helping me with my food sensitivities. He can do the full body acupuncture a Chiropractor wont. He is very very talented. He helped me enough that I had a normal Thanksgiving dinner last year for the first time in 3 or more years. Gluten free is more than I can handle right now.

I can only take about 5-7mg of mestinon a day. That is not near enough. Part of the issue is that if I take the 30 or 60mg I used to I now cant sleep. I feel this is related to the parathyoid issue being worse at the same time. The first year it wasnt the case. I woud love nothing more that to take the 60mg I used to. The first year it didnt do these things to me. But the parathyroid changes my nervous system. It makes it more sensitive. I am sure that is why is the pain narcotic counters the diareah because the mestinon is over stimulating some nerves in that area. It seems to do a similar thing to my urinary track too. Just the last 4 days have seen an improvement. But during the last 2 weeks I have gotten more sun than usual so I suspect my vit D is higher and parathyroid down.

Annie59