janiedelite Posted October 25, 2009 Report Share Posted October 25, 2009 Last Thursday I started taking mestinon. My local neuro wasn't really familiar with prescribing mestinon for POTS patients, but was willing to comply with the Mayo doc's suggestions. I started with 30 mg three times a day (with food). I'm now taking 30mg four times a day. I can go up to a total of 180mg a day. Here's what I've noticed:- about a 30% decrease in my fatigue during the day. Yay!- about a 50% decrease in the burning pain on my feet, hands, face, and mouth. No explanation for this, but I'll take it!- a moderate headache whether I'm lying or upright. I have headaches all the time anyway, but this is a bit worse.- an increase in time I can be upright. Yay!- increased nausea with some cramps. But really no help with my slow gut. I still have to strictly adhere to a gastroparesis diet and take meds to move things along.- feels like pressure in my head and chest which increased whenever I took the 60mg dose. I had a worse headache on the higher dose too.- Standing heartrate only increases by about 20 points after I take the mestinon! And I have high BP on standing, which has now dropped to a normal range!- My worst side effect with mestinon is a strange restlessness that kicks in 4 hours after I've taken it. It's really disrupting my sleep. Will this go away????So like most others here who've taken mestinon, it's not my miracle drug. When I took the 60mg dose, I didn't notice any more of a decrease in my fatigue than when I took 30mg, and the chest and head pressure/pain wasn't worth the higher dose. Next I'll start miralax, neurontin and then domperidone. I'm just adding one at a time because of my strange reactions to meds.I've read all the prior posts on mestinon, but would still like to hear from anyone who has had similar reactions. Thanks!!! Quote Link to comment Share on other sites More sharing options...
heathmcev Posted October 25, 2009 Report Share Posted October 25, 2009 thankful - i started pyridostigmine the same day as you i'm on a mini-dose to start though (due to med sensitivity), so I haven't had any side effects or benefits yet. I have to up the dose in a few days. Mine was prescribed by my POTS neuro, so I'm interested to hear Mayo suggested it as well. Looking fwd to hearing how you do! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 25, 2009 Report Share Posted October 25, 2009 Last Thursday I started taking mestinon. My local neuro wasn't really familiar with prescribing mestinon for POTS patients, but was willing to comply with the Mayo doc's suggestions. I started with 30 mg three times a day (with food). I'm now taking 30mg four times a day. I can go up to a total of 180mg a day. Here's what I've noticed:- about a 30% decrease in my fatigue during the day. Yay!- about a 50% decrease in the burning pain on my feet, hands, face, and mouth. No explanation for this, but I'll take it!- a moderate headache whether I'm lying or upright. I have headaches all the time anyway, but this is a bit worse.- an increase in time I can be upright. Yay!- increased nausea with some cramps. But really no help with my slow gut. I still have to strictly adhere to a gastroparesis diet and take meds to move things along.- feels like pressure in my head and chest which increased whenever I took the 60mg dose. I had a worse headache on the higher dose too.- Standing heartrate only increases by about 20 points after I take the mestinon! And I have high BP on standing, which has now dropped to a normal range!- My worst side effect with mestinon is a strange restlessness that kicks in 4 hours after I've taken it. It's really disrupting my sleep. Will this go away????So like most others here who've taken mestinon, it's not my miracle drug. When I took the 60mg dose, I didn't notice any more of a decrease in my fatigue than when I took 30mg, and the chest and head pressure/pain wasn't worth the higher dose. Next I'll start miralax, neurontin and then domperidone. I'm just adding one at a time because of my strange reactions to meds.I've read all the prior posts on mestinon, but would still like to hear from anyone who has had similar reactions. Thanks!!!Hi Sweetheart,I been on it for almost 2 years first the pharmacy wrote it for 3 times the amount 3 times a day for a month and I landed in the hospital with a near bowl obstrustion and looked like I was ready to deliver a baby..... Long story posted here somewhere... thought I was dying, guess I was slowly.Now, I'm very sensitive to all my meds but the mestinon first of all make us look healthy as it gives us hyperpigmentation. It was the first thing the doc said after my first visit as I was glowing from way too much. Even my eyes are bluer and they were really blue before. Still glowing, still get headaches and I get bloating, cramping and it really flares my irritable bowel. Just after I take it I have a really bad flare if I get up and go to the bathroom and walk about. I'm best to lay right down or I can't breath as I get so tachy. Best of luck to you!Bellamia~ I find that the tabs fall apart so I get both liquid and tabs for different occacions. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 25, 2009 Author Report Share Posted October 25, 2009 " Still glowing, still get headaches and I get bloating, cramping and it really flares my irritable bowel. Just after I take it I have a really bad flare if I get up and go to the bathroom and walk about. I'm best to lay right down or I can't breath as I get so tachy."Hi Bella Mia, So you continue to take the mestinon in spite of these side effects? I agree that it seems to be flaring up my GI issues, not helping them! But it gives me some energy which makes the side effects worthwhile for now. What benefit do you get from taking mestinon, and how does it outweigh your bad side effects? Quote Link to comment Share on other sites More sharing options...
iheartcats Posted October 25, 2009 Report Share Posted October 25, 2009 I have less fatigue/body aches with my 30mg/twice a day right now. I wonder when I should switch it up to 60/mg twice a day or 30/mg three times a day...I can take up to 120/mg, if needed.When I went off of it after taking a 180mg timed-release (very yucky side effects as it was just too much!), I felt 20% worse. So this medicine does help me (mostly with the aches and fatigue and a bit with blood pressure).I just can't take too much. But neither can people with MG even. It's a sensitive drug, from what I understand. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 25, 2009 Report Share Posted October 25, 2009 I'm a complicated case and allergic to almost every medication that I've been put on. I don't even know where to begin. Let's just say my eye lid doesn't sag anymore. lol They have run out of options as I'm allergic to beta blockers ; ) and most everything else.bellamia~ Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 26, 2009 Report Share Posted October 26, 2009 I could not tolerate the headache this medicine gave me. I could not wait for my teeny dose to leave my body, so that the headache would leave me as well. How could you stand the headache? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 26, 2009 Report Share Posted October 26, 2009 Now that I think way back I used to have a hard time moving my chest muscles. They kept thinking I had MD OR mG BUT TEST CAME BACK NORMAL.....I ALSO had bad pains behind my lungs. It hurt to breathe when i would wake up. It was sooooo bad, GLAD IT'S GONE!Bellamia~ Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 27, 2009 Author Report Share Posted October 27, 2009 It's so hard to tell if I'm taking too much of this drug because the symptoms of overdose are so similar to how I feel most days with POTS anyway! Anyway, I think I'm going to stay on it, just at a lower dose (maybe 30mg 3-4 times a day). I do think it helps with my fatigue somewhat. It is hard to tell.Also, prior to taking it my morning heartrates were 40-60 beats higher when I stood up. Now, they're only 10-20 beats higher and that's over 12 hours since taking the last mestinon dose! Quote Link to comment Share on other sites More sharing options...
shannon Posted October 31, 2009 Report Share Posted October 31, 2009 Just wanted to share my experience with Mestinon. I have been on it for about 4 years now. I take 180mg timespan each morning. I had some side effects early on (mostly digestive), but now I honestly don't have any, and my POTS is better than ever. This med definitely was the answer to my problems!!! I know everyone is different, but I hope it ends up working out for you too. Best of luck!! Quote Link to comment Share on other sites More sharing options...
Jen2533 Posted October 31, 2009 Report Share Posted October 31, 2009 Hi thankful,I was rx'd Mestinon for presumed Myasthenia on the 5th of Oct. I had horrible side effects like you describe until we got my daily dose straightened out. It took about three days after that and all the side effects went away. The biggest problem I had was how weak I became in the morning. The medicine only lasts for 4 hours max and with it wearing off in the night it actually set me back further than where I was when I started it. They added Mestinon Timespan to take at night (it releases over 9 hours, 60 mg at a time) and I'm seeing a HUGE improvement. Good luck, everyone reacts different but with my response to POTS meds and my symptoms it looks like I might have a shot at managing my disease.Hope this helps,Jen Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 1, 2009 Author Report Share Posted November 1, 2009 Thank you, everyone, for sharing your experiences with mestinon. This is my 12th day of taking it, and I've worked myself up to taking 30mg every 2 hours with little or no side effects now. Yay! I do think it helps with my fatigue and orthostatic-related aches and pains, and even my burning pain, reducing it overall by 30%. I called my neuro last Friday and asked for the 180mg time span tablets that were mentioned earler. I notice that the benefit of the drug wears off about 2 hours after taking it, which is why I take it every 2 hours. I don't even take it with food every time and my tummy still feels okay.I also asked my neuro to prescribe slow sodium, and I really hope he'll do it. I just can't maintain a therapeutic level of sodium throughout the day with my own food/drink intake. I had posted in a post on slow sodium asking if anyone in the US has been prescribed this. Feel free to PM me regarding your experiences with slow sodium! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted November 1, 2009 Report Share Posted November 1, 2009 I'm sooooooo very HAPPY for you!!!I'd like to hear about the slow sodium.I tried to get the regular sodium and my insurance would not cover it.MY granddaughter laid 1.25 down on the counter and said, "Nannie you need it, I'm paying for it!"Hope things continue to go well for you!bellamia~ Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 9, 2009 Author Report Share Posted November 9, 2009 That's so cute, BellaMia!I'm on the 180mg time-span Mestinon now. It still feels like I'm waking from a dream or coming out of a fog. I've been so sleepy for so long! You all know what I mean. I still have to lie down every hour or so, and I have days when I can barely speak and have to stay in my dark room. But it feels like those days are becoming less frequent. I'm actually sitting up (with my legs up) while I'm on the computer right now, instead of lying in bed with the computer in my lap! I've spent so much time in my bed, I'd almost forgotten what it was like to sit in the other rooms in our house! As I'm starting to regain some strength, I'm beginning to realize how sick I really have been.Last week I was able to dust the ceilings for the first time in 3 years! And I changed the shower curtain liner! The side effects from mestinon are pretty much gone. I take my morning pill with a little food, which helps. But I'm actually having less headaches than I did prior to starting the drug. My symptoms are still too variable to be able to work any type of job, but it feels like the bad periods are becoming more brief. My neuro said to have my PCP prescribe the slow sodium. That's fine... I see her next month. I've now started neurontin and I'll start domperidone in a few weeks. Just wanted to give you guys an update! Quote Link to comment Share on other sites More sharing options...
Jen2533 Posted November 10, 2009 Report Share Posted November 10, 2009 Yippee!!!! I am so happy that it is working out for you as well. It is a wonderdrug in my book. I'm feeling so good that I'm going to start back at work next week. I'm easing back in just starting with 1/2 days but I can't wait. I've also started doing yoga which is really helping the way I feel overall. I just wanted to let you know how excited I am to hear you are feeling better and that you were able to get the timespan, it is so much easier to not have to pop pills ever couple of hours.Jen Quote Link to comment Share on other sites More sharing options...
janiedelite Posted November 11, 2009 Author Report Share Posted November 11, 2009 Yes, I'm so glad I don't have to take 6 30mg pills a day. That was a pain! The timespan works fine for me. Congratulations on going back to work...that's great!!! Quote Link to comment Share on other sites More sharing options...
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