wibbleway Posted November 17, 2010 Report Share Posted November 17, 2010 My neurologist has put me on Mestinon again and for the life of me and it has given me a big headache. I remember years ago having it in my clinical trials at Vanderbilt and it didn't seem to do anything then either. Has anyone had great success with this drug and did the side effects go away? Also how has this drug shown itself working in your daily POTS? Thank you for any help! Quote Link to comment Share on other sites More sharing options...
Tia Koul Posted November 17, 2010 Report Share Posted November 17, 2010 My neurologist has put me on Mestinon again and for the life of me and it has given me a big headache. I remember years ago having it in my clinical trials at Vanderbilt and it didn't seem to do anything then either. Has anyone had great success with this drug and did the side effects go away? Also how has this drug shown itself working in your daily POTS? Thank you for any help!Hi, was on it for a few years. It took 3 weeks to get past the side effects. I did not get the headache. I had nausea, vomiting, GI stuff. But it was a wonderdrug for me. Try to stick it out a few weeks until you adjust. I have to get back on it actually, but it is a nice break having normal bm's for a change! Good luck getting past this tough period!! It will end soon! Quote Link to comment Share on other sites More sharing options...
wibbleway Posted November 17, 2010 Author Report Share Posted November 17, 2010 Thank you so much for the encouragement. Do you mind me asking why you went off of it?Cathy Quote Link to comment Share on other sites More sharing options...
Tia Koul Posted November 17, 2010 Report Share Posted November 17, 2010 Thank you so much for the encouragement. Do you mind me asking why you went off of it?Cathy Surely! My cardio wanted to do a trial to see if it helped with my nausea and vomiting issues that started a couple of years ago. It did not help, and I'm pretty sure those symptoms were endometriosis related. So, I have to get back on it, but I'm a little scared!!! lol. It's a little hardcore! My cardio doesn't even prescribe it really bc his patients can't tolerate it, but he was happy that it worked for me. I told him to ask his pts to try to endure for a few weeks, and then see how they feel. Because that's the hardest time. My 2 other docs had intially prescribed it. But the change was subtle, yet significant. I was able to function, albeit still limited, but better than before. It was the kickstart I needed. No other meds ever made a dent. Hope that helps! Quote Link to comment Share on other sites More sharing options...
corina Posted November 19, 2010 Report Share Posted November 19, 2010 i started mestinon years ago hoping it would be my miracle drug. it turned out that it wasn't but it did help regulating my temperature (was very low so always very very cold)which is important enough for me to stay on it. i need stomach protectors along with this med to keep me from (more) stomach trouble. good luck on trying!corina Quote Link to comment Share on other sites More sharing options...
sandymbme Posted November 19, 2010 Report Share Posted November 19, 2010 I was on Mestinon a couple of years ago, and while it helped my POTS symptoms a great deal, I couldn't tolerate the GI complications and had to go off of it. But it is definitely worth a try!Sandy Quote Link to comment Share on other sites More sharing options...
comfortzone Posted November 19, 2010 Report Share Posted November 19, 2010 I was prescribed this and clonidine yesterday. I'm to start the clonidine first -- then in a week and a half or two weeks begin the mestinon. I was told the major SE is diarrhea - this is to treat my main complaint of muscle weakness & fatigue that accompanies my pots-like symptoms....of course the doctor knows tons more than I could possibly know about how the drug acts and why it works and why he thinks I might be a candidate. So I'll get it filled and hope for the best. I am grateful you nice people posted your experience with the drug here - so I have a heads up :-) Quote Link to comment Share on other sites More sharing options...
comfortzone Posted November 19, 2010 Report Share Posted November 19, 2010 I knew this would happen ... more questions lol... bear with me?If you are sensitive to motrin and drugs like that -- meaning they give you heartburn, pain etc...even if you are on something like nexium or protonix -- will mestinon bother your stomach that way ? Or is it mostly diarrhea? Were you nauseated and then finally had to vomit - or did the pill come back up right away? I have GERD and even one little tiny motrin tablet with food and a ton of fluids will feel like it sears a hole in my stomach -- so that's why I was wondering about upper vs lower gi SE's with mestinon....? thanx Quote Link to comment Share on other sites More sharing options...
wibbleway Posted November 19, 2010 Author Report Share Posted November 19, 2010 Thank you all for your answers and questions. The doctor had to lower my dosage yesterday. My heart rate was not able to go up and it felt like my heart was going to bust. He cut the dosage way down to see what that would do. I had sweats, heart and head pain so bad yesterday. Today things have not been as bad with the lower dosage so we will see what happens. Like most of you, the doctor is using it to help with fatigue and to try to keep my heart rate level BUT with my heart rate level, the blood can't pump up from my legs easily. Then that causes the pain. Oh well! We keep trying. Quote Link to comment Share on other sites More sharing options...
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