houswoea Posted June 27, 2011 Report Share Posted June 27, 2011 Hi everyone! So far I am having the best summer since I got POTS! I can actually do things, and it makes me so happy!I am working as a camp counselor for kids with autism and it's super low-key, but it's really hard to remember to take all my meds when I'm watching my camper.So every time I miss a dose of mestinon, my body hurts like crazy!!! My legs hurt so bad I can hardly stand up, and it's really weird. I'm happy the medicine is working. It's the one that has made the most difference.I am wondering why it's doing this. Not because I'm worried or anything, but because I'm wondering if my body reacting like that means maybe that's the only one that is actually "treating" my problem. Anyone have experience with this?I hope everyone is having a happy summer too Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted June 27, 2011 Report Share Posted June 27, 2011 I take Mestinon as well. When I first started on this med I was on 60mg 3xday. I also had a hard time remembering all three doses. I could definately tell when I missed a dose, or even when I was due for one. I didn't have the pain like you mention, but highly symptomatic otherwise. I'm not entirely sure why this happens (have theory but unsure). I switched to the timespan 180 once a day and it seems to be ok for me - now I only have to remember it once! I also have to use a pill box or I never remember...I'm really happy to hear that you're having a good summer so far - I hope it keeps up for you! Quote Link to comment Share on other sites More sharing options...
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