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One large study (203 POTS patients) found that about 60% experienced significant improvements in fatigue and heart rates. Mestinon has been a favorite drug of Dr. Systrom’s in both POTS and ME/CFS for quite some time. If I remember correctly, a study assessing its effectiveness either is or will be underway.
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
You can read about Mestinon here. Pyridostigmine is used to treat muscle weakness in people with myasthenia gravis or forms of congenital myasthenic syndrome. It is also being prescribed 'off-label' for the postural tachycardia syndrome. However for some forms of congenital myasthenic syndrome it can cause harm.
Mestinon inhibits the enzyme asethylcholinesterase, that's pretty much all it does. It does not reach the brain and has a relatively short half-life of 3-4 hours. I don't see why it would take several months to notice the effect unless we are talking about some hypothetical long-term adaptations of the body from increased acethylcholine activity.
583. Dr.Systrom seems to have quite a success with Mestinon on his patients. I'd be interested to hear what others WHO GOT WORSE on Mestinon found to be helpful. Im also wondering if you are mild/moderate or severe and how onset of ilness was.My naive hope is to find similarities in our group and eventually could define a subset of ME.
When I started mestinon, I was on a dose of 30 mg 3 times a day for a whole month. Then my doctor increased the dose to 60 mg 3 times a day (although some other people here on the forum have had their doses increased much more slowly).
Dr. Systrom and his research team are now conducting a clinical trial on the therapeutic effects of Mestinon: "The Exercise Response to Pharmacologic Cholinergic Stimulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.”. To understand the effects of Mestinon, Dr. Systrom utilizes an invasive cardiopulmonary exercise test (iCPET ...
Mestinon, Huperzine A, and ParasymPlus all seem to boost acetylcholine in different ways. I couldn't say which of these would be appropriate for someone's orthostatic intolerance or exercise intolerance, since different people can have very different responses.
Welcome to Phoenix Rising! Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
As far as mestinon is concerned, Systrom recently published a double-blind study in which ME/CFS patients underwent an iCPET, were then given a single dose of either mestinon or placebo and underwent a second iCPET about an hour later. Cardiac preload failure improved in the patients who received mestinon.