Pyridostigmine for Dysautonomia User Reviews
Brand names: Mestinon, Mestinon Timespan, Regonol
Pyridostigmine has an average rating of 7.4 out of 10 from a total of 18 reviews for the off-label treatment of Dysautonomia. 67% of reviewers reported a positive experience, while 17% reported a negative experience.
Reviews for Pyridostigmine
- svhar...
- Taken for 1 to 2 years
- October 29, 2022
Mestinon (pyridostigmine) "It took me quite a while to tolerate mestinon, mostly nausea and headache and twitchiness, but after being on it for about two years I have almost no side effects. It wears off after several hours and I take it 3 times a day. It is difficult for me to take it at night but would probably help even more if I could. I also take Magnesium which stopped my ectopic heart beats and muscle rigidity, cramps and spasms. I was pretty lucky to be prescribed this so soon after having Covid."
- Super...
- July 31, 2015
Mestinon (pyridostigmine) "The good: less dizziness and blood pooling in legs due to POTS. The bad: I have all of the negative common side effects: I sweat horribly, I have a regular cough with mucus, I drool a lot and not just at night, I have frequent loose stool, my eyes are super blurry sometimes, and my tongue cramps so sometimes I sound like I've had a stroke or a severe speech impediment. Dose: 30-60 mg with dinner and 180 mg time span before bed. (I can't handle the side effects during the day.) I have been on this for over a year. I take this and accept the side effects because without it I would not be able to work due to my brand of POTS. The side effects aren't consistent, and my body metabolizes things differently every day."
Frequently asked questions
- Can Mestinon be used to treat Postural Tachycardia Syndrome (POTS)?
- Can I stop taking Mestinon (pyridostigmine)?
- How does Mestinon help with myasthenia gravis?
- What's the mechanism of action for Mestinon (pyridostigmine)?
- Christy
- Taken for 1 to 6 months
- May 22, 2023
Mestinon (pyridostigmine) "I’ve tried many drugs for my POTS/ Dysautonomia with no success, but Mestinon is really helping me. I’m able to function more and my fatigue is reduced. It sometimes has a side effect of extreme perspiration , but I can manage. It has been a game changer for me."
- Aalexpp
- Taken for 2 to 5 years
- March 13, 2022
Mestinon (pyridostigmine) "Mestinon used to be a very helpful medication for myself, I have AAG/pandysautonomia along with many other diagnosis’. I personally found this medication helped quite a bit for the first while I was on it. (I’ve been on a lot of different medications and this one helped more than any other thing for my dysautonomia and my blood pressure issues particularly.) Anywho my blood pressure and other related things were somewhat stable for a little while after starting Mestinon but it only lasted for a couple months before I became too tolerant and my body was no longer getting help from it, the opposite in fact.. sadly we had to discontinue it since it was only causing side effects and nothing beneficial but I’ve gone on it a couple other times for short periods after being off of it for a long while and it helps again, I find it is very useful to use when in a particularly bad flare and only need it for a little while so it keeps it’s effects if it helps you :)"
Are you taking this medicine?
- Mammy
- June 29, 2014
Mestinon (pyridostigmine) "I've been on 30 mg of Mestinon two times a day for about three months. I had diarrhea the first few days, more shortness of breath, and some drowsiness. After that, I started noticing improvement in my cognition (the worst part of my dysautonomia and fibromyalgia, to me), and I am able to keep 'doing' things longer than I could before. I do notice when it begins to wear off, and I may go up to three times a day on it. I'm very pleased. The only negative I have is a big increase in eyelid twitching and awful muscle spasms in my feet. My neurologist has had me start B-6 for this, and it helps a lot."
- D1ano
- September 1, 2018
Mestinon (pyridostigmine) "I have been on this a week and it seems to be significantly helping breathing issues at night, overall dryness everywhere, constipation, nausea, and urinary retention. Side effects, though, are very unpleasant-very blurry vision (especially at night or in darker lighting), headaches, pelvic pain, muscle cramps, and overall fatigue. I am currently taking a dose of 40 mg three times a day."
More FAQ
- CJW
- Taken for 6 months to 1 year
- August 30, 2023
Mestinon (pyridostigmine) "I've been taking Mestinon for about 6 months. I experimented with dosage in the beginning, but what I have found most helpful is half tablet (30mg) 2x daily. I had a few side effects in the very beginning like some dizziness and looser stools, however I tolerate this medication very well, and it has become more and more helpful over time in terms of less fatigue, improved energy, and cognition. This is the first medication I have tried for my dysautonomia (and ME/CFS) that has been more helpful than the side effects were harmful (and I have tried many). Really grateful for this drug!"
- POTSy...
- Taken for less than 1 month
- February 17, 2017
Mestinon (pyridostigmine) "I started on 30 mg 2x daily. I had initial loose stools, but have gone back to constipation. I didn't get much relief from my tachycardia, and also noticed an increase in body twitches (not tremors). I'm now trying 60 mg 2x daily and I still have the increase in twitches and, most notably, headaches (worse than the normal everyday ones), and breathing issues (I already have asthma and laryngospasms). Not sure any benefit is worth these side effects, but it's only been a couple of days, so I'll give it a little more time."
- Anonymous
- Taken for 1 to 6 months
- September 14, 2022
Mestinon (pyridostigmine) "I had been on Mestinon for 6 months, in the mean time I felt bad from the beginning. My brain fog worsened, and at times it was hard to move my tongue, almost stroke like symptoms. In the beginning it caused severe nausea and headaches. Just seen my neurologist again and he took me off of this drug. It definitely did not work for me."
- Anonymous
- March 31, 2012
Mestinon (pyridostigmine) "Started taking this a few months ago for dysautonomia and the POTS secondary to it. It helps the low blood pressure, low body temperature, and the gut transit issues. It does not help the nerve pain or cognitive impairment. Sometimes, when I take it a tad too soon (or even sometimes when I take a normal amount at a normal time), it will help my guts, but I will have a lot of difficulty breathing."
- Noodles
- Taken for 10 years or more
- June 24, 2024
"I just want to share that if you are having problems tolerating pyridostigmine, please talk to your doctor about the possibility of considerably reducing your dose. It took me about 10 years to figure out that I need a very very small dose to feel better without the side effects. I have now for 15 years been using the pyridostigmine syrup so that I can easily take very small doses, like 5 mg. It is more costly, but well worth it to me. Do not do this without talking to your doctor first. Good luck everyone!"
- Denise
- Taken for 1 to 6 months
- September 9, 2023
"I started on 30 mg, 3x daily. Taking the middle of the day dose has been a struggle to remember. I have felt more energy, less brain fog, little less pain. We increased the dose to 60mg after 2 weeks. I feel antsy/restless still after a month with increased dose. I'm finding sleep is difficult (falling, staying, early waking) even with taking 5mg of Ambien. I like having more energy, but now have to manage rest times as I have small crashes, less intense and amount of time is shorter."
- Nay...
- Taken for 1 to 6 months
- June 11, 2019
Mestinon (pyridostigmine) "It actually made my breathing problems worse ~ was started on 30 mg once a day and increased to 30 mg 3 times a day"
- Anonymous
- June 13, 2009
Mestinon (pyridostigmine) "I take 30 mg (half tablet) 4 times daily. Works great for dysautonomia."
- Droopy
- Taken for 1 to 6 months
- March 20, 2018
"This medication has been a lifesaver for me. It allows me to breath much easier and has helped with brain fog. I would not be able to work without it."
- Tycho...
- Taken for 2 to 5 years
- November 30, 2020
Mestinon (pyridostigmine) "After two years of use symptoms improved"
- Bashe
- June 13, 2009
"Has been very helpful for both my dysautonomia and related gastroparesis symptoms. I feel stronger too, but the effect doesn't last long. I have to take it at least 4 x daily."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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Mestinon Timespan (pyridostigmine) "Pyridostigmine ER 180 has been life-changing. The temperature intolerance has become balanced. I am no longer freezing nonstop. The ability to gain muscle strength is amazing. I can walk longer and stand, and I have increased energy. The blood pooling in my feet is not nearly as bad. The small fiber neuropathy has decreased in episodes and flares. It has helped with rapid heartbeat and less dizziness. The side effects in the beginning are not pleasant. However, if you know going in that you may experience severe cramping, diarrhea, runny nose, and watery eyes. As time goes by, the body adjusts, and the benefits are worth it and the discomfort. My record is if your physician prescribes the dosage of 180 ER time-released x 2 per day. Start with only one a day, your body may not be able to handle the side effects. I noticed within two days of taking Pyridostigmine, I was able to walk without muscle weakness and small fiber neuropathy."