Radical Rest and Beyond

Summary

The author of Encephalogirl (who signs as Michelle) treats her ME/CFS-related dysautonomia and POTS with guanfacine and low-dose Abilify (titrated from 0.5mg down to 0.25mg after migraines, then back up to 0.5mg), an increased dose of low-dose naltrexone, a switched antiviral, Pepcid 20mg twice daily plus an H2 inhibitor added to mast cell stabilizers, a supplement stack including ubiquinol 200-600mg, alpha lipoic acid up to 250mg three times daily, NAC 500mg twice daily and curcumin 1500mg daily, and non-drug measures like abdominal and leg compression garments, 3+ liters of fluids with sodium loading, and switching her immunoglobulin replacement from subcutaneous to IV. She had progressed from moderate to severe illness by November 2023, prompting a period of "radical rest." She reports her POTS treatment brought improvement that was "nearly immediate and substantial" and that the Abilify was noticeably effective within about a week, but overall says she "stopped the slide but did not hit remission," only expanding her baseline "a bit." She remained on all these treatments as of the May 2024 post, noting that Abilify specifically is a drug that "often stops working for us over time," so the gains are being actively managed rather than settled.

What they credit

Credits IVIG, Low-dose naltrexone, POTS medication, Antihistamines & MCAS, Antivirals, Other prescription drugs, Radical rest, Supplements, CoQ10 / ubiquinol, Guanfacine, H2 blockers (famotidine, cimetidine), Herbal and Chinese medicine, IVIG / subcutaneous Ig, Low-dose Abilify / aripiprazole, Low-dose naltrexone, NAC and glutathione, Radical rest, Salt, fluids and compression.

Symptoms mentioned

Symptoms: Headaches & migraine, Mast cell (MCAS) & allergies, POTS & dysautonomia.