Quote:
Originally Posted by winic1
I got stomach pain, and still do, if I don't eat with the mestinon. And I don't mean a couple of crackers, I have to EAT something substantial. It's a nuisance, I don't always want to eat when it's time for a pill, but I suffer if I don't. I eat first, then swallow the pill, or swallow then immediately eat a bunch. Worst case is to take the pill, then wait 20 minutes or so, then eat, that seems to be just deadly.
The other thing I discovered is a bit more obscure. I have lactose intolerance. Generally, I can cheat a bit if I eat the dairy-whatever with other food. Wanna take a guess what one of the fillers that they make the mestinon pills with is? Lactose!!! Now, a pill is not all that big, but it's not like eating a pill-sized piece of cheese, it's a little packet of lactose, and on an empty stomach it makes a wicked little bubble of gas in my guts that just hurts! I found that by eating a lact-aid or dairy-ease pill before swallowing the mestinon pill, I didn't get the gut cramps. Found I could get away with as little as 1/4 of the dairy ease tablet brand we get most of the time. You mention she has had IBS at times in the past, if it is at all lactose-related, this might just be a trick that could help. I don't know why they put lactose in their pills, knowing that it can be a problem for people, makes no sense to me. But for me, it then makes sense why I have to either eat a significant amount first, so the lactose in the pill is buffered by the other food, or do the lact-aid pill to handle it.
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Winic - Thank you soooo much for this info. When my wife was first presenting with symptoms of IBS, I was almost certain that she was developing Lactose Intolerance, as many women do post-menopause, particularly as she doesn't eat dairy on a regular basis.
Funny, I remember when I was a kid, my mother would eat cereal with an inch or less of milk in the bowel. It seems that many women just don't have a taste for many types of dairy or may even have an aversion to it, which must be some kind of cruel joke considering that women need
more dairy than men.
The day after my above post, I finally convinced my wife to go back to the 1/2 tab 3x's per day that her doctor started her on and that has made a HUGE difference. But at some point she is going to have to go back to a full 60mg tab, or possibly even more to adequately address her vision and her muscle weakness, so I am
DEFINITELY going to pick up some Lactaid or Dairy-Eze as the concentrated lactose could very likely be the culprit.
Excessive gas is definitely a byproduct of the Mestinon in her case, whether it's a loud rumbling in her digestive tract, painful pockets of gas in her gut, a hard knot in her chest as well as the most obvious type of gas. So you really may be on to something with the lactose, and I cannot
Thank You enough for this valuable info.
This is why I turned to a user forum such as this, as people have real experience that might take doctors months or longer to figure out, if they do at all.
When she goes back to a full pill, hopefully her body will also be more acclimated to the medicine, which could also help. And I know that eating before hand is always sound advice, but sometimes this poor woman simply could not eat due to so much digestive misery. You have really given me some incredible insight.
[QUOTE=kiwi33;1273082]Daniel, what you have described about what your wife has experienced is a known side-effect of Mestinon.
It might be worth encouraging her to discuss this with her doctors.
Mestinon Side Effects in Detail - **/QUOTE]
Kiwi, Thank You for your post. I/we are in continuous contact with her PCP and Neurologist, though some days they are on rounds and not at their private practice.
Also, although stomach pain and intestinal cramps are common side-effects of Mestinon, it is worth noting for anyone who finds themselves being prescribed Mestinon, the
SEVERE stomach pain and
SEVERE intestinal pain/cramps from which she has been suffering are
NOT common side-effects and should be addressed
IMMEDIATELY by a physician:
**
One of the possible causes for these kinds of severe reactions can be due to over-dosage, which is why I urged my wife to go back to 30mg 3x's/day, which was prescribed to her for only 1 week. It might be that - at least for her - going up to 60mg 3x's after one week was just too much too fast.
If anyone else has some theories, I again welcome whatever info you might have to share.
Thanks again to winic and kiwi for the care and consideration in reading and responding to my post. As always, I am humble and grateful.
Daniel