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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.
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I'm glad the forum link was helpful. Treatment for all the different types of OI (NMH or POTS) can be complicated since it depends on the cause of the problem, how the patient reacts, and so on. What works great for one patient is a nightmare for another patient. But even though each patient is different I still think that the more information we can get, the better.ahimsa. Your suggested made me have another look at dinet. ahhh. I didn't scroll far enough but I now see a thread regarding my beta blocker with bradycardia question and also something on mestinon. Thanks!
It was a mixed bag for me. Good but with side effects. I have OI but it is not POTS.
Efficacy of a half dose of oral pyridostigmine in the treatment of chronic fatigue syndrome: three case reports
Chronic fatigue syndrome (CFS) is characterized by persistent mental and physical fatigue for at least 6 months. Its pathophysiology is unknown and there is no proven effective treatment. We describe three cases who fulfill the criteria of CFS, in whom a defect of neuromuscular transmission and dysautonomia are present and who respond to acetylcholine-esterase inhibition.
Case 1: 18-year-old female with a 3-year history of CFS. Response of compound-muscle-action potential, recorded using surface recording electrode, over left abductor pollicis brevis muscle, to repetitive nerve stimulation (RNS) at a rate of 10 Hz showed a 42% incremental response. Composite autonomic scoring system (CASS) showed mild cholinergic impairment (cardiovagal score: 1; sudomotor score: 2). Serological tests for Epstein–Barr virus (EBV) revealed positive antiviral capsid antigens (anti-VCA) immunoglobulins G (IgG). Oral pyridostigmine therapy (30 mg) resulted in marked improvement in symptoms.
Case 2: 28-year-old female with 10-year history of CFS. RNS, using identical protocol, showed a 60% incremental response over the same muscle. CASS showed mild cholinergic impairment (cardiovagal score: 1; sudomotor score: 2) and this patient was also positive for EBV. This patient responded dramatically to 10-mg pyridostigmine.
Case 3: 29-year-old female with a history of CFS for longer than 15 years. Repetitive stimulation, using identical paradigm to left abductor pollicis brevis muscle, showed a 42% incremental response. CASS showed mildly cholinergic impairment (cardiovagal score: 2; sudomotor score: 1). EBV antibody titers were positive. Patient responded to 30-mg pyridostigmine with an improvement in her fatigue.
These three cases generate the hypothesis that the fatigue in some patients with clinical CFS might be due to a combination of mild neuromuscular transmission defect combined with cholinergic dysautonomia. Support for this thesis derives from the improvement with cholinesterase inhibition.
http://www.sciencedirect.com/science/article/pii/S0928468003000075
Interesting as an anecdote, yes. But I think it is sending an inaccurate message that mestinon is an overlooked drug that would help a significant proportion of dysautonomia patients. My autonomic specialist found that it helped less than 10%. You would have to fit a very specific profile to have a chance of benefiting from this drug.There is an interesting story on HR on Mestinon: