momdi Posted May 12, 2006 Report Share Posted May 12, 2006 Yeah! Mike is finally coming home after a week in the hospital, with zofran, inderal, and mestinon. This seems to be very useful for helping him to get down food and liquids, though he still continues to feel full with just the smallest amounts.The hospital also called in a neurology consult who seemed to know about POTS - shocked! He's the one who prescribed the mestinon.What's been your experiences - good or bad - with mestinon? I've used the search engine here, but while many of you seem to be on mestinon, I couldn't find many posts discussing it.Thanks,Dianne Quote Link to comment Share on other sites More sharing options...
corina Posted May 12, 2006 Report Share Posted May 12, 2006 dianne,i am taking mestinon for quite some time now and it is one of my favorite meds as it helps me to keep warm, made my walking a little better (can't walk for long but i don't look like drunk anymore) and some other things i forgot (sorry, brainfogged today). it took me some time to get to the right dose, but now i think i found it (120mg 3 times a day). started really low with 10mg's 3 times a day and built my way up. good luck to mike and hope he will feel better soon corina Quote Link to comment Share on other sites More sharing options...
Ernie Posted May 12, 2006 Report Share Posted May 12, 2006 Hi,I tried it 3 times and I had severe diarrhea and stomach cramps. Quote Link to comment Share on other sites More sharing options...
ariella Posted May 13, 2006 Report Share Posted May 13, 2006 hiI take 60mg of mestinon 8 times a day. I take it for myasthenia gravis in addition to POTS. It has helped me a lot, but feel symptomatic as it wears off. Also, lately it is not helping my POTS symptoms as well. I'm not sure if it's because it's losing effect, or because the prednisone I'm taking for the MG is aggravating the POTS. This week was very POTSy despite taking a mestinon every 2 hours. It's a good idea to take it with some crackers, it can be very hard on the stomach.ariella Quote Link to comment Share on other sites More sharing options...
Sunfish Posted May 14, 2006 Report Share Posted May 14, 2006 dianne - i know it doesn't mean everything is better, but glad to hear that mike is at least home.i've written quite a bit about my experience with mestinon on the forum...i'm guessing it's more under posts on gastroparesis.in short though it did wonders for me last year - combined with zelnorm - in getting me eating pretty normally again....turned around a 35 pound (unintentional) weight loss for me. essentially the GI side effects that keeps some from being able to continue on the med - stomach cramps, etc. - are due to increased motility, which is just what i needed.mestinon was definitely a big part of the "magic" that allowed me to eat again last year. i still couldn't eat huge amounts at once & had flare-ups but they were only several days here & there...a huge improvement.unfortunately my tummy/GI tract have pretty much frozen up again but that's likely b/c i've declined substantially overall...not that the mestinon stopped working.hang in there & good luck, melissa Quote Link to comment Share on other sites More sharing options...
Eillyre Posted May 15, 2006 Report Share Posted May 15, 2006 Mestinon has been great for me! I had very rare and minimal stomach cramps at first, but now I have no side effects that I'm aware of. On Mestinon, I'd be living a pretty normal life if it wasn't for the CFS.Angela Quote Link to comment Share on other sites More sharing options...
Suzanne Posted May 16, 2006 Report Share Posted May 16, 2006 Mestinon seems to be helpful for many, but not for me! I tried it twice, it made me worse and gave me terrible nightmares. But try it and see and good luck. Quote Link to comment Share on other sites More sharing options...
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