Psalm 63:6-8 Posted March 8, 2015 Report Share Posted March 8, 2015 Hello!This is my first ever post here, so greetings to you all! My question is for any of you who have taken Mestinon or Pyridostigmine. I began this med October 2014 and was so encouraged with the benefits it gave me which were: less orthostatic intolerance, less muscle weakness, less dizziness, and much less bloating. I started with a low dose and gradually increased to 60 mg 3x a day. Along the way as I was increasing the dose I experienced side effects of bouts of diarrhea and muscle twitching (especially my eyelids to the point I couldn't see straight sometimes). Still, it was worth it! When I attempted to go up to 4 pills a day I started having nastier side effects, such as slurred speech and muscle weakness along with the muscle twitching and diarrhea. My doctor and I decided to cut back on the dosage but the side effects did not subside, so we discontinued it. Have any of you had similar experiences and later gone back on Mestinon? Do our bodies just need a break from it every now and then? This med has given me the greatest results of anything I've tried except for beta blockers and I would love to be able to get back on it. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 8, 2015 Report Share Posted March 8, 2015 Hi Psalm,Welcome to the DINET Forum! I haven't personally taken Mestinon but I know that a great deal of the members on the forum have, and I'm sure they'd be willing to offer their advice and share their own experiences once they see your post. We're willing to help here!I just wanted to welcome you to the forum, and I also hope that you find a balance with the Mestinon soon. It's so unfortunate when we find a medication that works so well for us in the beginnnig only to have not play out that way..Hang in there... the other members have found a lot of relief in mestinon and will hopefully be able to help you!! Sarah Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted March 8, 2015 Report Share Posted March 8, 2015 Hello there and welcome to the forum. I'm so sorry you have had a bad experience with Mestinon especially since it was so helpful for you. I have been on 60 mg 3x daily since Nov. 2011 and like you have realized enormous benefits from it. Three times a day dosages seem to be the most common. Last year my PoTS Neuro considered an increase to 90mg 3x daily but in the end left the dosage as it was and added in MCAD medications instead. You might do a topic search for Mestinon as I know others have posted their experiences with this medication. I believe others had wondered whether the effectiveness of the medication had worn off over time and there were others that had side effect issues. If it were me I would let my body have a rest then restart the Mestinon gradually going back up to the 60mg 3x daily or whatever is tolerated and leave the dosage there if that was okay with my doctor of course. I guess I have been fortunate and not suffered any side effects with Mestinon but I have never gone beyond a 60mg 3x daily dosage. I hope you get this resolved soon and feel better. Janet Quote Link to comment Share on other sites More sharing options...
Becia Posted March 9, 2015 Report Share Posted March 9, 2015 Yeah, it was horrible for me, sadly. Twitching, severe abdominal pain, never slowed my heart like they had expected it too. I was on 60mg twice a day? Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 9, 2015 Report Share Posted March 9, 2015 http://forums.dinet.org/index.php?/topic/26130-delayed-med-adverse-reaction/?hl=mestinonTrying to find some prior threads for you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 9, 2015 Report Share Posted March 9, 2015 http://forums.dinet.org/index.php?/topic/24726-pyridostigmine-vagus-nerve-and-paresthesias/?hl=mestinon#entry230999 Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 9, 2015 Report Share Posted March 9, 2015 http://forums.dinet.org/index.php?/topic/24706-anybody-have-bad-reactions-to-mestinon/?hl=mestinon Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 9, 2015 Report Share Posted March 9, 2015 http://forums.dinet.org/index.php?/topic/23162-mestinon-pyridostigmine/?hl=mestinon Quote Link to comment Share on other sites More sharing options...
Psalm 63:6-8 Posted March 10, 2015 Author Report Share Posted March 10, 2015 Thanks Sarah, Janet, Becia, and Katie for your replies! An update: I did decide to go back on my pyridostigmine after less than a week off. I believe the right dose is something I'm going to have to work out by trial and error. I started out yesterday on a tiny dose of 30 mg in the morning only. I had noticeable improvement again even on that little bit. It was a much easier day getting around my house and my stomach felt better, too. Maybe this will be a medicine I use lightly, every now and then. I have an appointment with a new-to-me POTS doctor at the end of the month, so hopefully I will get some good direction there! Quote Link to comment Share on other sites More sharing options...
corina Posted March 10, 2015 Report Share Posted March 10, 2015 Hi Psalm, welcome to DINET. I use a stomach protector to help me prevent stomach trouble while on mestinon. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted March 11, 2015 Report Share Posted March 11, 2015 Hi Psalm,I'm so glad you decided to try a low dose of the Mestinon again, are able to tolerate it and it is helpful. The tolerated dosage and frequency seems to be very individual. This whole medication thing really is trial and error. I went back and reread the old threads Katie had posted and was surprised at how few people tolerated and benefited from this medication. I guess I had forgotten. It's unfortunate that more people are not able to tolerate it as it can very helpful in alleviating some symptoms. It seems to be a favored medication by Mayo Neurologists. I don't use a stomach protector but I do have food in my stomach when I take my Mestinon. I will say that over time I have wondered if some of the effectiveness of this medication has worn off a bit in terms of how much more it helped fatigue in the beginning. That's fantastic that you have an upcoming appointment with a PoTS doc. I'm sure you will get some good direction. Going to a PoTS knowledgeable doc will make all the difference in the world. Best of wishes to you. Keep us posted. Janet Quote Link to comment Share on other sites More sharing options...
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