Answer Summary
Members discussed adjusting Mestinon doses and shared how lower or more frequent dosing helped reduce side effects like leg cramps, sweating,... Read more
I never forget when its time to take my meds I can tell because it does help open up my eye, my prisoms work great for the double vision.
I've been going in the opposite direction. I started on 60 mg. three times a day, and couldn't tell if it was working or not. Some days the symptoms are noticeable enough that I start right off first thing with the drug when I get up, and often I can't tell if it is making any difference. Last week I asked my neurologist if I could try either a bigger dose, or a more frequent dosing schedule. He now has me taking it up to five times a day. I don't yet know how well this will work, because on a good day I forget about taking it until I notice symptoms...and when I do take it, I can't tell if or when it starts to work for me. In fact, when it was three times a day I would wait on purpose until I HAD to take it to see straight, so I wouldn't run out of doses during the course of the day. On five doses a day I shouldn't have to do that anymore...but I still am left forgetting to take it at times. I am not complaining, far from it! I think it is a blessing to have such mild symptoms. I wish everybody got off as lightly as I am at the moment.
My neurologist also said that on the bad days the Mestinon may be helping, even though I don't see it, because the symptoms could be worse without it. SO far no side effects...which is another blessing.
I dropped from 6 to 5. It helped with the unwanted bowel side effects a bit. I talked with my neurologist first, of course.
I take the 60mg mid day. I still take the 180 mg 2x a day.
Now with this cold my right eye that has the wrinkle on the retina membrane feels tight and I have a hard time focusing , I hoping its just a flare from the cold I have really been coughing hard and a lot ,getting better❤💙💙