lalalisa Posted January 1, 2006 Report Share Posted January 1, 2006 Hello everyone,Happy New Year!I was wondering how long it takes to notice any positive effects from Mestinon? Yesterday I began taking 1/2 tablet of a 60 mg dose -- twice daily. I am slowly working up to possibly 60 mg (1 tablet) three times daily if I tolerate it. Is this something that has to build up slowly or should I be noticing the effects already?My blood pressure is the same so far (low). I have noticed a bit of muscle twitching but nothing horrible.Any thoughts/advice will be greatly appreciated, Lisa Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted January 1, 2006 Report Share Posted January 1, 2006 (edited) Hi Lisa! Happy New year to you too!! well when i started taking mestinon last yr at this time.. the first few days where really rough for me.. I had alot of the muscle twitching.. and my muscles felt very werid and heavy.. actually the first days of taking Mestinon (I started out at 60 mg. 3 times a day.. ) I was bad off I couldnt get out of bed... BUT.. BIG BUT here.. after I got thru the initial let my body adjust and get used to it... I got a hug surge of energy.. and felt good....that took about 2-3 days before I noticed agood effect of the med.. once the weird muscle thing stopped..i felt some good of the mestinon..I have noticed.. now that i have a dose age that i can hadnle.. that I do feel abit better.. my mind is clearer.. and I do have a bit more energy.. so it does help me...I now take 30 mg (half of a 60mg..pill) 4 times a day.. every 4 hours... and I can feel the effect if it is wearing off.. its like my body has an internal clock that lets me know its time for some BB's or Mestinon.. really it does!!I'm glad that they are staring you out slowly on mestinon... that is best.. Mestinon can casue some GI upset in people...I was on some high doses 120mg.. 2-3 times a day.. and 180 mg timespan twice and once a day.. then I have knocked down the dosage till I am at the dose now..I really hope that the mestinon helps you Lisa!! with out mestinon my mind would be much much more fuzzy.. and disoriented/dizzy then it allready is!!HAppy New Year!Linda Edited January 1, 2006 by dizzygirl Quote Link to comment Share on other sites More sharing options...
corina Posted January 1, 2006 Report Share Posted January 1, 2006 Lisa,I can't really remember how long it took before i noticed the mestinon working, but after my body got used to it, which took about 4 to 6 weeks i think (in which i wnated to stop the mestinon about a dozen times i think, but my doc convinced me to hold on!!!) i noticed it kept me warmer and a few other things which of course i forgot. what i wanted to let you know is: good luck with the mestinon, try to hold on if you can and i hope it will do you lots of good!!!!corina Quote Link to comment Share on other sites More sharing options...
ariella Posted January 1, 2006 Report Share Posted January 1, 2006 I try to be careful in answering mestinon questions, because I take it primarily for myasthenia gravis, and I'm lucky enough to be economical that it also takes care of my POTS. Usually. I don't remember exactly how long it took to help my POTS symptoms specifically, but I clearly remember having apparent "overload" when I was taking it together with the midodrine---I was shaky and tachy etc. Just my experience,though. I know some people here take both effectively. Like Corina, I used to be a "cold POTSy" and this has improved with mestinon. Don't forget to take it with food.If I remember correctly, I don't think I felt it was controlling the POTS adequately until I was upped to 60mgx4. (I currently take even more--for myasthenia--and my tummy seems to have gotten used to it) It usually handles my POTS fairly well now-better than midodrine.Ariella Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 1, 2006 Report Share Posted January 1, 2006 I am about to try Mestinon for the first time tonight. Dr Grubb wants me to start with 1/2 of a 60mg pill 2 times a day and work up to 2 full ones a day. I think I am going to only take a quarter of one though.I am REALLY nervous about trying this med.. I dont like the muscle problems..... Does anyone know if Mestinon can be used only when needed?And also I am wondering if there is some sort of withdrawl if you decide to stop taking it?That is a biggy for me.. I dont want to get on a med that I have to wean off of at some point.Thanks if anyone can help!HAPPY HEALTHY NEW YEAR TO EVERYONE! Quote Link to comment Share on other sites More sharing options...
michiganjan Posted January 2, 2006 Report Share Posted January 2, 2006 Especially to Jenn,I just started on mestinon yesterday. Dr. Grubb prescribed it for me -- 1/2 tablet 2 times a day. I started with 1/4 tablet once a day with breakfast. I will do this for a week, then go to 1/2 at breakfast, then add the second dose. I hope I get that far. I'm with you, Jenn. I am going to take it slow, but I am going to take it and persist and give it a good trial. Keep me posted on your progress and I will keep you posted on mine. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 2, 2006 Report Share Posted January 2, 2006 Thanks Jan! I feel a little better knowing that you both are also starting it as well. Lets keep each other posted on what is happening.......I hope it will help all of us to some extent.... Quote Link to comment Share on other sites More sharing options...
joanie Posted January 2, 2006 Report Share Posted January 2, 2006 As I understand it, mestonin helps by acting on muscles to help them contract. (It can also help the gut contract, helping intestinal problems. Or- giving rise to upset stomachs. ) About a year ago, when my 16 year old was able to go out more with friends, she would take it just before she wanted to go out. She said it helped her muscles to enable her to walk farther. ( She still crashed in proportion to the amount of walking she did, so I didn't really see a long-term benefit there. )She didn't take it all the time, as it did upset her stomach.(maybe if we had stuck with it, we would have seen long-term benefit.) We have since found that an occassional, smaller dose does seem to help her digestive track move. Now that she is more confined to home, her muscles have become too tight thru lack of use. Now, if she takes the mestinon, she says it hurts. I don't really know if it is medically advisable to take when needed, but, it did help her for a while. Perhaps sticking with it more regularly and adjusting the dose is the key. Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 2, 2006 Report Share Posted January 2, 2006 Hi,It took me 1 hour to feel the positive effects and 3 days to feel the negative effects. I had to stop it after 3 weeks and 3 trials. Quote Link to comment Share on other sites More sharing options...
ariella Posted January 2, 2006 Report Share Posted January 2, 2006 mestinon in it's regular form stays in the body for about 3 hours, and then has a half-life of a little more than that. If I forget to take a pill, I will often start to feel dizzy and shaky-i.e. back to my normal POTSy self about 4 hours after taking it. It theoretically should begin working with the first pill, within 45 minues or so, at least that's what it is for people who take it for muscle weakness. I love the mestinon, it helps me function much better. In terms of POTS symptoms, it has helped my nausea (among other things). Pre-mestinon, I was having a lot of trouble holding down food. I don't think it's considered an addictive drug, but if you do want to stop, check with your doctor just to make sure.ariella Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted January 2, 2006 Report Share Posted January 2, 2006 Here's the link to the Myasthenia Gravis Foundation of America's FAQ's regarding Mestinon. Fortunately my husband tolerated the drug well and ramped up to 2 60mg tablets after the first week and has felt benefits since that time. http://www.myasthenia.org/information/Mestinon.htm Quote Link to comment Share on other sites More sharing options...
lalalisa Posted January 4, 2006 Author Report Share Posted January 4, 2006 Thanks everyone for your input!It sounds like many of you were helped quickly by Mestinon - this is encouraging! I ended up talking with my Dr. who talked with Dr. Grubb who said that I should try it for 2-3 weeks as it may take this long to notice the affects. I am up to 30 mg - 3 times daily. (when I take an entire 60 mg tablet my GI tract starts acting up) Maybe this side effect will go away....I will keep trying to up the dose as tolerated. Thanks again,Lisap.s. How are the other Mestinon trials going? It sounds like quite a few of us are starting it right now. Quote Link to comment Share on other sites More sharing options...
d4g7 Posted January 4, 2006 Report Share Posted January 4, 2006 I have to agree with Ernie.I took it for a couple of weeks - I felt great afterwards, but then had terrible stomach upsets and diaherra (Spelt wrong, but I am sure there is an 'h' in there somewhere).I believe it can work miracles for those that can handle the side effects.The best of luck with it. Quote Link to comment Share on other sites More sharing options...
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