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Old 12-06-2010, 10:41 AM
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
roguepuppet roguepuppet is offline
Junior Member
 
Join Date: Nov 2010
Location: indiana
Posts: 45
10 yr Member
Default Too Much Mestinon?

I find myself wondering more and more if the mestinon is still helping and if it has started to cause problems as well.

When I first started the mestinon about a month ago, it was like a miracle. I took the first dose on the way home from the dr's office and I spent 2.5 hours in the garden for the first time in a month. Before that I lasted about 15 minutes before being exhausted, or less. I could tell very distinctly when the dose kicked in and when it was starting to wear off. Because it wore off in way less than 6 hours (first try, once we knew I tolerated it was 60mg every 6 hours), the neuro has been working with me to work on the dosage. At 120mg in once dose, I got bad pharyngeal weakness side effects on the third dose, so we backed off. The last dose that was stable is 90 mg every 6 hours with 30 mg at the 3 hour inbetween as needed. I did that for a week happily. Now I am finding that i hardly ever use the 30mg in between and have even scaled a few f my other doses down to 60 or skipped entirely.

I am scaling back NOT becuase I feel strong without the meds, but because the side effects of pharyngeal weakness, mild fasiculations and irritation of my asthma seem to be getting more easily triggered. My daily routine has NOT altered significantly, so it is not like I am suddenly getting more rest.

The oddest thing is that although I feel stronger with the mestinon, it does NOT help my endurance. Yes, I can do something feeling a bit more pop, but doing things like holding my arms up at shoulder length, the mestinon does not make me last any longer before i get tremors, aching and arms wear out.

Anyone else have changes in their reaction to mestinon over time? Confused. considering going of of it completely, but afraid of what that will do to my ability to work as well...
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