Maux52

I have done recumbent exercise since a Fibromyalgia diagnosis in 1994. These days I work-out on a NU-step for 30-40 min a day. During warm weather I do deep water running for 45 min at an indoor pool. That helps my sleep disorder and helps stabilize my joints (I also have EDS). It's the absolute best way to get blood to recirculate to my brain and it dispels my brain fog in 20 min. Otherwise, it doesn't seem to improve my POTS. The infusions are the best thing overall to help my POTS in the last 9 years. But, I am afraid, at $45 x 3 a week, it will be unsustainable. I'm hoping to go down to one day a week so, I can at least continue some of the benefit.

I am also on IV saline infusions 3x a week, for the next 3 months. I just finished my third today and went grocery shopping standing-up without and electric cart for the fist time in years! I have refractory, hyperadrenergic POTS (since 2010) and I am 67. The infusions make my legs feel almost entirely normal! And, the fasciculations and cramping is 99% gone. I still have some dizziness and blurred vision at time when I was out walking but, no serious fatigue or need to sit down. I didn't know what to do with myself! I am not sure many docs schedule these regular infusions or not. Mine is at the new Autonomic Clinic at Hopkins. I would love to keep in touch with all of you who use regular infusions.

My Neuro has ordered IV saline infusions 3x a week, for the next 3 months for me. He did not mention any permanent effect from this but, I feel so great after just 3 infusions, I wonder if there will be some sort of long-lasting relief from the treatment? While I still have blurred vision and dizziness while walking, my legs haven't felt this normal in 9 years. Has anyone else done infusions this often and for several months? If so, can you share your experiences?