You also mention that you were prescribed Plaquenil, which helped you a bit. Did you use this medication to treat POTS-dysautonomia? I have heard about a few POTS patients who have also improved with Plaquenil, but I do not know why it may work in some cases. In fact, to the best of my knowledge, this medication is not a standard treatment for POTS. I would be very grateful if you could provide me further information about this potential treatment in order to discuss it with my doctors.
I was prescribed Plaquenil for the autoimmune disease(s) and started that before the Ig. It is not typically used in POTS. I had several ANA tests over decades pre dysautonomia before one came up positive. That was the third test in 18 months post dysautonomia diagnosis and I just randomly asked my neurologist to order it so my advice is keep requesting an ANA test. Rheumatologists here generally won’t treat without a positive ANA and symptoms. I had swollen and painful joints but nobody checked those until I saw the rheumatologist. I was in such awful shape at that point I didn’t even know they were painful. Because I had the positive ANA and Celltrend tests my neurologist ordered the Ig which does help many symptoms but not specifically blood pressure or heart rate I *don’t think*. I am on soooo many drugs and have had so many changes I don’t really know which helps what. Add in brain fog and well… I do know that my fatigue/malaise/joint pain all improved when I started Plaquenil and again when I started Ig. Adding low dose naltrexone 6 months ago did have a stabilizing effect on my heart rate and blood pressure. I know that because it was the only thing that changed at that time and it’s recent. That decreases inflammation and maybe, I don’t remember, crosses the blood brain barrier.
I am not remotely well, I am still house bound and as @toomanyproblemsstates I often don’t realize how much something is helping until I stop it for whatever reason. There simply isn’t a magic pill or treatment for dysautonomia and for the majority of us, even with specialists, it’s years of trial and error. I am certainly better than I was at my worst (85 pounds, hospitalized, couldn’t eat without severe pain and on TPN for 6 weeks) but can’t be upright for more than 5-20 minutes, weather dependent, but I don’t pray to die every night anymore. I can manage around the house and do occasional light house work but every day is different. Sometimes every hour is different. I am, however, hopeful that long Covid will supply some answers for those of us who have been suffering for years.