Hi Susan!
I hope you're having a good start to the week and got some good rest this past weekend. Your husband's observations are duly noted. In fact, there are two "too much" effects that have drawn my suspicion:
- I have also read that too much Mestinon can actually aggravate existing symptoms, or make symptoms that were so mild you didn't even notice them suddenly become a problem, which definitely has happened.
- After some more research, I found some drug research results that indicated the stomach and intestinal pain of such severity indicated an over-dosage.
So two nights ago, I convinced my wife to go back down to the 1/2 tablet 3x's a day that the doctor started her on for one week. And PRESTO! Her severe pain basically went away. I was actually nervous that it wouldn't, simply because her intestines might have become so irritated that the presence of ANY of the Mestinon would bother her. I was thinking that she might need a few days off of it completely to allow the lining of her bowels to heal. But by going back down to 30mg, her suffering all but went away.
She still has much rumbling and gas, but not the severe cramping and pain. So I am very glad I was able to convince her to drop the dosage. She will eventually have to take more to help her vision and her muscle weakness, but maybe more time for her body to get used to the medicine may help.
Also, in another post one person said that she is lactose intolerant, and one of the fillers they use in Mestinon is lactose, for some reason? She takes some Lactaid (not even a full tab) and that helps her tremendously, along with a full meal with each pill. I think the lactose issue may be right on the nose. So many women develop Lactose Intolerance of varying degrees, esp. after menopause, and along with IBS, Lactose Intolerance is quite likely something from which she suffers, so Lactaid my just be the ticket.
I read your IVIG post - Thank You for that world of information. It sounds as though it gets more tolerable over time. I was confused by the frequency - is it once every three weeks? We're not there yet, but IVIG my be down the road, depending on if my wife responds to the Mestinon. So far, even at 60mg 3x's a day, she wasn't noticing much of an improvement and the improvement of her vision at 60mg seemed to actually go away after a few days before going back to 30mg. We'll have to see how it is over time.
That's one thing I could never get a straight answer about with the doctor, when should she notice some improvement with her eyesight and muscle weakness? Immediately? After a week? A month? I really have no idea. What I do know is that there has been virtually no improvement with the Mestinon, but again as your husband said, it might be because she was taking too much too soon (thinking of a Grateful Dead song here...).
Also, just so you should know, there is something weird about your WP blog. If you click your logo, which is supposed to take you to the root of your site link, something tries to download. It doesn't appear to be a valid file of any kind, but since the browser doesn't know what it's linking to, it instead treats it as a file download as opposed to a page. I'm using Windows 7 Ultimate Edition and Firefox v48 on this laptop. I think I am logged into WordPress at the moment, so I'll have to go to another PC where I'm not logged in to WP and try it to see if the same thing happens, but I thought you should know and check it out.
Hoping all is well on your end!
Best,
Daniel