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Does anyone have any experience with Mestinon for POTS?

V

Vineyard1

Senior Member
Messages
109
I saw a cardiologist last week who treats POTS and she put me on Mestinon 30 mg twice a day. I find that it causes widespread muscle pain, which I did not previously have. Also, my heart rate is between 100-135 with the minimalist activities, such as walking around my house trying to make a meal etc. The Mestinon is supposed to help with that and I don't find a change so far.
Has anyone else been on this med and experienced muscle pain? Did it take a while being on it to notice results?
I developed POTS last September and it is just too much to deal with on top of ME/CFS.
Thank You!
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I got respiratory depression from 1/8 of a 60 mg Mestinon (approx 7.5 mg) but I am not really representative of the average population here. I also did not tolerate a CCB at all. So far, the only thing that controls POTS for me is a beta blocker.
 
K

kangaSue

Senior Member
Messages
1,853
Location
Brisbane, Australia
Vineyard1 said:
I saw a cardiologist last week who treats POTS and she put me on Mestinon 30 mg twice a day. I find that it causes widespread muscle pain, which I did not previously have. Also, my heart rate is between 100-135 with the minimalist activities, such as walking around my house trying to make a meal etc. The Mestinon is supposed to help with that and I don't find a change so far.
Has anyone else been on this med and experienced muscle pain? Did it take a while being on it to notice results?
I developed POTS last September and it is just too much to deal with on top of ME/CFS.
Thank You!
Click to expand...
A localised muscle group reaction is known to happen with Mestinon. I wasn't taking it for POTS but got chest pain and leg pain on the same dose as you so cut it back to 15mg for a couple of days which got rid of the pains then increased back to 30mg without exacerbating the problem again. The increased heart rate does occur for some too, being just another muscle group which generally settles after a few days.
 
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