McBlonde Posted June 19, 2012 Report Share Posted June 19, 2012 I had no side effects other than euhporiua and then a mild stoned feeling.That's not a side effect, that's a bonus!!! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted November 13, 2012 Report Share Posted November 13, 2012 Just wondering if people are having continued success on this drug, or any of the new members have used this drug with positive results. Still calling myself 90% better. Also, feel very uneasy about my recovery....as if I could be one bad day from a relapse. There are days when the POTs fear just gets in my head. Quote Link to comment Share on other sites More sharing options...
peregrine Posted November 13, 2012 Report Share Posted November 13, 2012 Enh - I am probably going to go off of it in a few weeks (we're going to settle down on a dose of clonidine first before changing this). The signal:noise ratio is cruddy - how I feel on any given day doesn't necessarily correspond with whether I remembered to take my third dose or not, and the effects of the drug seem to be swamped out by my individual day-to-day variation. Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 13, 2012 Report Share Posted November 13, 2012 Hiya, I have just started on Mestinon, 60mg, 3x day and early indications are SO EXCITING!!I haven't been dizzy today. I have baked. HELLO MOMMA! I even was able to read the notices my daughter brought home from school without my glasses on! I am desperately hoping that these good effects are not short term. I likey.I have noticed more frequent nausea, "tummy wumping" (which is my term for a the cramps and movement on my insides.... makes a nice change to the normal dysmotility I experience) and a sharp short headache about half an hour into the dose. It goes though. Also I am having more problems holding my bladder (usually I have urinary retention) and increased tears. Most of these effects seem to counterract problems I have, so it could be an all round winner.I figure the fatigue is just part of my 'normal'.ooooooooh! fingers crossed it is still doing for me in 5 weeks what it is doing for you Rama! Quote Link to comment Share on other sites More sharing options...
corina Posted November 13, 2012 Report Share Posted November 13, 2012 I'm keeping my fingers crossed for you rachel!!! Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 14, 2012 Report Share Posted November 14, 2012 Thanks Corina, today is not so great but I am still positive. I guess there will always be variation as much as I want mestinon to be my magic bullet! Do any of you take an anti-nausea with mestinon? which have been effective for you? Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted November 15, 2012 Report Share Posted November 15, 2012 I am interested in mestinon as I have severe dry mouth and eyes as well as POTs and other autonomic problems. Recently I've been suffering severe muscle weakness and eyelid drooping/double vision which I suspect are connected.In the past I have tried pilocarpine for dry mouth but found it gave me intense mouth burning, similar to the erythromelalgia pain I get in my face. Given that mestinon is also a parasympathomimetic agent, does this mean it would also cause the same oral burning and worsen the facial erythromelalgia? Quote Link to comment Share on other sites More sharing options...
Rachel Cox Posted November 16, 2012 Report Share Posted November 16, 2012 My doctor calls it a 'try it and see' drug, as it is different for everyone. I know it has helped my dry eyes and mouth immensely. Still early days but I like life much better with mestinon. I have a new prescription for an anti-nausea which should help. Has anyone tried domperigon? (Sounds like champagne! if only...!) Quote Link to comment Share on other sites More sharing options...
Natops Posted November 16, 2012 Report Share Posted November 16, 2012 (edited) @Elizabeth. Have you been diagnosed yet? Your symptoms sound very much like Lambert Eaton Syndrome (LEMS) to me. – Dry Mouth/eyes. Severe muscle weakness. Droopy eyelids makes me think of Lambert Eaton Syndrome. If you haven’t already you might want to find a neurologist who could order the Mayo’c Clinic Paraneoplastic Panel. In the Panel is the Calcium Channel (P/Q and N-type) Antibody test (among other important antibody test). LEMS is 95% diagnosable with a positive P/Q AB. I have leg muscle pain/weakness along with POTS. I had positive N-type. While I don’t fit the text book definition of LEMS, its close enough for my doctor to pursue treating me as such to see if my condition improves. The medicine for LEMS is 3,4 DAP. Its only available in clinical trials. My doctor is trying to get me into one. In the meantime, he recently put me on mestinon…. And my pain and weakness has reduced by 40% Edited November 16, 2012 by corina medical advice Quote Link to comment Share on other sites More sharing options...
corina Posted November 16, 2012 Report Share Posted November 16, 2012 Rachel, I did use a stomach protector (I've had a stomach infection before and am very easily triggered by meds that work on the stomach). I was on Pantoprazol (I'm in Europe, not sure what it would be called in the US).Elizabeth I'm not sure how it would work for you. Could you aks your pharmacy to find out if they know? Quote Link to comment Share on other sites More sharing options...
Mgwife Posted January 7, 2021 Report Share Posted January 7, 2021 My husband has been diagnosed with Myasthenia Gravis, mostly can’t open his eyes. The mestonin seems to not be having much effect (1 week in). Any thoughts? Neuro says come back in 6 mos Quote Link to comment Share on other sites More sharing options...
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