babettess Posted March 16, 2010 Report Share Posted March 16, 2010 Hi Everyone,My neuro prescribed Mestinon for me back in October and I am just now getting up the nerve to try it. My daughter is on spring break this week so she will be here with me in case I have problems. I am very sensitive to medications and have quite a lot of FEAR involved when I try new ones. I read through the threads on Mestinon and looked at several websites about it, but nothing beats the live advice of this board.I will be starting out at a fraction of the normal dose. I am to take 7.5 mg once a day for a week and then increase by 7.5 mg's every week until I get up to 30 mg. I am so thankful that my neuro understands my medication sensitivities and starts me out at very low doses of everything we try. He says the pharmacists probably think he's crazy for the dosages he orders for me because they are so small, but oh well. So my questions to those of you who have knowledge about Mestinon are:How long does the medicine stay in your body?If I try it today, do the side effects go away by the next day?Can you stop it at anytime?Hope everyone is having a sunny, pain & palpitation free day!Babette Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 16, 2010 Report Share Posted March 16, 2010 For me, the side effects took about a week to get through the worst of them, although I started at 30mg/day. I ended up stopping the medication abruptly when I was on 180mg/day without any problems (I asked my neurologist and he said it was fine to do this).Hope it helps! Quote Link to comment Share on other sites More sharing options...
dsdmom Posted March 16, 2010 Report Share Posted March 16, 2010 Glad you are starting out small. How are you cutting it into such small fractions? Or are you using the liquid? I use the liquid version.How long does the medicine stay in your body?It has a very short half life. I take it every 4 hours. (3x day) so if you don't react well it shouldn't be around too long.If I try it today, do the side effects go away by the next day?I think so - but be prepared you might have increased bowel movements at first. You also may not.Can you stop it at anytime?Yes. I also stopped at 20mg...so I only take 20mg 3/day. Quote Link to comment Share on other sites More sharing options...
KristinL Posted March 16, 2010 Report Share Posted March 16, 2010 I am currently taking Mestinon. I get along with it well. I am taking 180mg TS (time span).I took it for about a year or so and then stopped because I was trying to wean off my meds. Then I relapsed at the end of August and started taking it again...it works for me.Good luck with the Mestinon...I hope it helps. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted March 16, 2010 Report Share Posted March 16, 2010 Babette,I totally relate to what you are feeling. Some of my 2 worse (right now) symptoms of POTS is the headache and nausea. When my doc tried me on Midodrine, wow, my headache got way worse. Now he wants me to try Mestinon. I am still just looking at the prescription. I haven't gotten it filled yet. I, too, can only take small doses.I hate just doing this by trial and error and seeing how it feels. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 16, 2010 Report Share Posted March 16, 2010 I am now taking 30mg twice a day and will be going back to 60mg twice a day (used to take that amount). It seems to help with my blood pressure, nausea, and some muscle pains.I did have 'bad' bowel movements (I know no other way to put that nicely) for a few days. Then it improved. My body had to adjust. I did try the timespan and had a lot of the side effects - I just do not do well with timespan drugs, personally. They were bad for about 18 hours and then it was out. The non-timespan has a much shorter half-life.I was so scared to take it, too, but it has helped! I've put off going back up to 60mg (was supposed to last month) but it's on my to-do for this month. I used to be on it at that dosage and I know it's OK but yet, you know how it is. After the first few days of adjustment I was glad it started to help. Let us know how it goes! Quote Link to comment Share on other sites More sharing options...
babettess Posted March 18, 2010 Author Report Share Posted March 18, 2010 Well I got up my nerve and took 1/8 of a 60mg tablet today. No side effects so far!!!! I know that is a small dose, but I can only handle small doses of most all medicines. I will take 1/8 for a few more days and then go up to 1/4 like my neuro ordered. I am hopeful that this will help.Thanks for all the replies.Babette Quote Link to comment Share on other sites More sharing options...
goldicedance Posted March 19, 2010 Report Share Posted March 19, 2010 Babette,Good luck with Mestinon. I applaud your bravery.I take Mestinon 180 TS. I have been on Mestinon since October 2004. I take the TS at bedtime as it seems to irritate my tummy less.It is difficult for me to see how getting up to 30 mg of Mestinon a day is going to make that much difference in how you feel in the long run.I too am training a standard poodle to be my good family dog. He is now 14 months old. I wish he could be my assistant but I have had difficulty with his leash walking - he pulls. I do have him wearing a gentle leader.Feel better.Lois Quote Link to comment Share on other sites More sharing options...
scarfgirl Posted March 19, 2010 Report Share Posted March 19, 2010 No experience with Mestinon, just wanted to wish you good luck. Quote Link to comment Share on other sites More sharing options...
babettess Posted March 20, 2010 Author Report Share Posted March 20, 2010 Actually I am taking 7.5 mg now at 1/8 of a 60mg tablet so when I get to the full dose for now it will be 60 mg. Brain fog is soooo fun. I don't know if my neuro will increase it again after I get to 60 mg or not.Today was day two and so far the only thing I've noticed is my mouth is dry about an hour after taking it. I can handle that. I am so glad my doctor is willing to work with me and let me start out on such a small dose. Goldenicedance - that's so exciting that you also have a standard poodle. Mine is female and she is 9 months old. She is doing great. I use a gentle leader sometimes on my bad days so its easier on me. I am working with a trainer over the internet and it is going really well. The Teamwork books are great to use for training ideas. You can get them at Amazon. I am hoping we can pass the public access test this summer. Good luck with yours. They are great as familly pets. Babette Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 20, 2010 Report Share Posted March 20, 2010 Babette, I am doing pretty well with it and I have had problems with all kinds of meds. I did more today without even thinking about it. Hope you are doing well. I also really want to know how many h-POTS people take this med. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted March 21, 2010 Report Share Posted March 21, 2010 Hey you poodle lovers I have a cockerpoodle who I wish could have been trained as a service dog. He is so funny when the nurse comes over and takes my BP and PT is here working on my legs. He gets right on the bed in between all the action. He's so funny he prefers to be on 2 legs more than four. He's my guy, like a snugly white panda bear. I'd be lost without him. `:3 woof Bellamia~ Quote Link to comment Share on other sites More sharing options...
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