Pyridostigmine for Dysautonomia User Reviews

• CJW...
• Taken for 6 months to 1 year
• August 30, 2023

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!"

• Chr...
• Taken for 1 to 6 months
• May 22, 2023

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."

• svh...
• Taken for 1 to 2 years
• October 29, 2022

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 it would probably help even more if I could. I also take magnesium, which stopped my ectopic heartbeats and muscle rigidity, cramps, and spasms. I was pretty lucky to be prescribed this so soon after having COVID."

• KDK...
• Taken for 1 to 6 months
• February 17, 2021

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."

• Sup...
• July 31, 2015

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."

• Aal...
• Taken for 2 to 5 years
• March 13, 2022

Pyridostigmine "Mestinon used to be a very helpful medication for myself. I have AAG/pandysautonomia along with many other diagnoses. 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.) Anyhow, my blood pressure and other related things were somewhat stable for a little while after starting Mestinon, but it only lasted for a couple of 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 of 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 its effects if it helps you :)"

• D1a...
• September 1, 2018

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."

• Mam...
• June 29, 2014

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."

• Noo...
• 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!"

• Anonymous
• Taken for 1 to 6 months
• September 14, 2022

Pyridostigmine "I had been on Mestinon for 6 months. In the meantime, 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. I just saw my neurologist again, and he took me off of this drug. It definitely did not work for me."

• POT...
• Taken for less than 1 month
• February 17, 2017

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
• March 31, 2012

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."

• Den...
• 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."

• Liv...
• Taken for 6 months to 1 year
• January 5, 2025

"I have POTS and VVS. Pyridostigmine has helped decrease dizziness and brain fog as long as I don't overdo it, improved my ability to stand even while I still cannot stand very long. I have more stamina during the day. Basically, I'm unable to do more because of Pyridostigmine, though I feel better doing what I do. I also have Sjögren's, and Pyridostigmine helps produce more saliva. I was reading reviews on here because I've seen some on four pills per day. I currently take three 60 mg tablets."

• Nay...
• Taken for 1 to 6 months
• June 11, 2019

Pyridostigmine "It actually made my breathing problems worse. Was started on 30 mg once a day and increased to 30 mg three times a day."

• Anonymous
• June 13, 2009

Pyridostigmine "I take 30 mg (half tablet) 4 times daily. Works great for dysautonomia."

• Dro...
• Taken for 1 to 6 months
• March 20, 2018

"This medication has been a lifesaver for me. It allows me to breathe much easier and has helped with brain fog. I would not be able to work without it."

• Tyc...
• Taken for 2 to 5 years
• November 30, 2020

Pyridostigmine "After two years of use, symptoms improved."

• Bas...
• 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."