icthus Posted July 8, 2009 Report Share Posted July 8, 2009 After I read one entry in my search that said tachy symptoms became much worse after going off mestinon, I'm a little concerned. The MD wants me to try mestinon for low BP, but before I swallow, did any of you have negative side effects from taking mestinon that did not go away after a few weeks of stopping the drug?Also, is there anyone who thinks the mestinon might have done more harm than good?Thanks for your replies. Quote Link to comment Share on other sites More sharing options...
flop Posted July 8, 2009 Report Share Posted July 8, 2009 Icthus,I've never tried Metinon myself (not been suggested by my doctors) so no personal experiences to share. However I am thinking about the person who said tachy was worse after stopping mestinon. I wonder if that person got a benefit from the mestinon whilst they were taking it and so noticed more the lack of benefit (ie more tachy) after coming off the medication??Just a rambling thought!Flop Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 8, 2009 Report Share Posted July 8, 2009 Mestinon was not helpful for me. It made me even weaker than normal. This went away within a few days of stopping the med, though. There were no long term problems. I didn't have any side effects that lasted for more than 4 days after discontinuing.Rachel Quote Link to comment Share on other sites More sharing options...
dsdmom Posted July 9, 2009 Report Share Posted July 9, 2009 I like mestinon but can only take small doses of drugs so I take the pediatric preparation - it's liquid. That way I can measure out smaller increments than are possible with the pill. Something to think about if you want to start small. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 9, 2009 Report Share Posted July 9, 2009 I just started taking this. I haven't noticed any difference yet. I have heard that it can take up to 2 - 4 weeks to notice any benefit. I'll keep you posted.Erika Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 9, 2009 Report Share Posted July 9, 2009 I was taking 60mg/Mestinon twice a day and it wasn't sure if it was helping. It wasn't making me worse (except some gastric issues for 3-4 days which I expected).After about 6 weeks my EP had me try the 180mg timed-release. That was far too much for me...I had a lot of the yucky side effects and felt awful for a day. So he had me go off of it. I noticed a change when I went off of it...my symptoms were worse (so the Mestinon was helping me). I'm not 100% sure how it helps, but I have less fatigue and I think my BP is more stable.So going off of it didn't make me 'worse' in the sense it was from the Mestinon, I think I was worse in that it was helping my POTS.I'm back on 30mg/twice a day now and will work my nerve back up to 60mg/twice a day that was helping before the big dose. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 7, 2012 Report Share Posted September 7, 2012 Hello everyone,I know this is an older thread, but I was wondering if anyone took mestinon for a while, found it helpful, but then started developing side effects.I believe that some of my symptoms are side effects of the mestinon - blurred vision, muscle aches and weakness, muscles twitching all over my body, joint pain, generalized weakness, tiredness, shortness of breath; not to mention that my stomach is constantly growling, and my GI tract is completely messed up lately. (all of these are symptoms i didn't have when i was diagnosed with POTS). Plus, my HR is still high (lately my resting rate is in the high 80's) so I don't really see the benefits of taking it anymore.I am not looking for medical advice, but I would like to know if I can stop taking it cold turkey, or I should follow a tapering schedule. (I've been on it since March).Wish I could ask my dr, but he's not available.Thanks,Alex Quote Link to comment Share on other sites More sharing options...
peregrine Posted September 7, 2012 Report Share Posted September 7, 2012 I currently take 60mg 2-3x daily; I maxed out at 120mg 2-3x daily but started having serious speech problems and confusion, so we backed off. For me it mostly helps with my energy and general wellbeing, but it's hard to tell since the effect is pretty weak. Personally, I can forget to take it, or stop taking it for a day or two to experiment, and I don't have any issues if I do so, but probably worth checking. Quote Link to comment Share on other sites More sharing options...
Alaska Posted September 8, 2012 Report Share Posted September 8, 2012 I had the slower heart rate thing and irregular heart beat... then I didn't take it anymore Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 8, 2012 Report Share Posted September 8, 2012 Peregrine, Alaska,thanks for the info. Quote Link to comment Share on other sites More sharing options...
dakota Posted September 8, 2012 Report Share Posted September 8, 2012 My daughter is on mestinon 60mg 3x/day. She wasn't sure if it was doing much. Then she ran out of her prescription and we had a hard time getting it refilled. She was off of it for about 5 days. She realized that it actually was helping quite a bit -- just like peregrine said, with energy and general well being. She also had a lot more prescyncope without the mestinon. We were finally able to get the prescription refilled and she believes it really does help her. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 16, 2012 Report Share Posted September 16, 2012 Dakota,I appreciate your input. I guess I'm going to try stopping mestinon for a while and see what happens. My symptoms don't seem to want to go away, on the contrary I feel like I'm getting worse.Did manage to get a hold of my dr, but he doesn't think that I could be having side effects as the kind of problems I'm describing are extremely rare ...but then so is POTS...( this frustrates me more than anything). Also, he doesn't really know why the treatment doesn't help, but makes me worse...Time to take the bull by the horns and see what happens. Worst case scenario, I'll start mestinon again. I just hope there won't be any withdrawal symptoms.Alex Quote Link to comment Share on other sites More sharing options...
tommykazim Posted September 26, 2012 Report Share Posted September 26, 2012 Hi, can I ask people on Mestinon if they were put on it from having tested positive for ganglionic acetylcholine receptor antibodies? Wondering if I should get tested for these auto-antobodies and if positive then treatments like Mestinon may work for me.. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 26, 2012 Report Share Posted September 26, 2012 Tommy,I have been tested for those antibodies and the test came back negative. Still my dr thought mestinon might be helpful for me.When I started taking it I did notice an improvement in my overall well being, but I've had many ups and downs since being diagnosed, plus I started taking a bunch of meds at the same time, so it's hard to tell whether i was benefiting from mestinon, or the other pills, or it just happened that I had a couple of good (less symptomatic) weeks.I've started tapering now on my own and I haven't noticed much of a difference (no worsening or improvement). Given though that it's only been a week since I started lowering the dose, it might be too early to tell.Another thing I read about is that patients having an underlying autoimmune problem causing their POTS might benefit from taking mestinon.A suggestion - you might want to start a new thread as this is quite an old one, or a poll - you might get more answers.Best,Alex Quote Link to comment Share on other sites More sharing options...
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