statesof Posted July 14, 2016 Report Share Posted July 14, 2016 So I finally got up the courage to try mestinon, I'm on a low dose of 15mg because I'm usually very sensative to medications, I honestly can't tell if it helped my POTS symptoms at all today but did notice some effects: Mestinon pretty much took away my anxiety, better so than Xanax except I don't have the tiredness I get with the Xanax. It also made me feel a strong urge to do things that are mentally engaging like reading, versus watching tv which is typically what I do throughout the day when I'm first starting a new medication so I can monitor how my body reacts. I also feel like my minds making connections it normally wouldn't, for some reason in some respects it is like this medication is having an almost adderall-like effect on me. It also makes me feel less aware overall and made me feel more faint-like throughout the day, I had to keep "snapping" myself out of it kind of like if you feel like your going to fall asleep while driving; I've only ever felt fail on this medication and beta blockers. As far as POTS symptoms it's really hard to say if it is doing anything, I don't like feeling less aware, almost like I'm in this cloud, but my brain bloodflow feels a bit more stable. I think I may try this again tomorrow but if it doesn't give me the mental clarity that I usually have I think I'll probably stop. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 14, 2016 Report Share Posted July 14, 2016 Hi there, I haven't taken this medication before so I can't comment on side effects or benefits. But it sounds like you did get some benefits that were really positive for you, despite the issues with the feeling cloudy. I hate that feeling, its the worst. Hopefully, these are side effects that will pass after a few days. I know it's been a huge help to many people for digestive issues and temperature regulation. If you decide to take it today, I hope you have a better day! Quote Link to comment Share on other sites More sharing options...
statesof Posted July 14, 2016 Author Report Share Posted July 14, 2016 Has anyone else had personality changes while on Mestinon? Things like motivations, changes in anxiety, or of the like? Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 14, 2016 Report Share Posted July 14, 2016 Hi! My neuro told me is was likely to feel less fatigued and have more energy if the mestinon turns out to be an effective treatment. I can't honestly say I've noticed it but I'm having other complications not related to mestinon that have prevented me from increasing my dose. The first few days I took it (1 tablet 1x/day), I did have a 2-4 hour window where I felt pretty good. I'm not sure if it was a result of lower HR, less fatigue, or both. But, I can say, that I really want to get to a place where we can try me at the full dosing schedule because those 2-4 hours were the best I've felt in a long time. Currently, the daily migraine has taken over my life so that is taking precedence in my treatment right now. Quote Link to comment Share on other sites More sharing options...
statesof Posted July 14, 2016 Author Report Share Posted July 14, 2016 I'm slowly testing how the Mestinon affects my ability to do things physically, I think it gives me more stamina but tomorrow in going to actually do some leg weight stuff. I have noticed though that Mestinon kind of makes me feel like I'm under the influence of something, not exactly like alcohol but it shares some of the qualities. I'm not sure if that's an adjusting to the medication thing or not, I as well am just doing the 1 does a day but it seems to last pretty long, does anyone know if peridostygmine br is the extended release version? Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 15, 2016 Report Share Posted July 15, 2016 The br stands for bromide. Pyridostigmine bromide is the full generic name for Mestinon. There are references to a "controlled release ", "sustained release", and "extended release" version but it can't find specific info on each (which I find odd.) My POTS neuro said that the goal dosage for POTS patients is 60 mg 3x/day which I have also read in some papers I read regarding the use of mestinon for POTS. I'll see if I can find them. Quote Link to comment Share on other sites More sharing options...
Katybug Posted July 15, 2016 Report Share Posted July 15, 2016 http://circ.ahajournals.org/content/127/23/2336.full Quote Link to comment Share on other sites More sharing options...
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