Permanent Effects from IV Saline Infusions?

[Maux52]

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?

[Pistol]

@Maux52 - I have been on weekly home infusions since October last year and am greatly improved. The most important benefit is that I no longer get seizures and rarely syncope ( I used to get autonomic seizures frequently ). Also my hypertension is gone, so is my chest pain ( was able to stop and decrease several meds due to the infusions ). I have more energy and my attention span has improved. I rarely get surges anymore - unless sick or stressed. My limitations remain - I am mostly home bound, require frequent rest periods and need a wheel chair when walking is required but that I can all live with. The fluids have made POTS less threatening for me since I am more stable cardio-vascular wise. 

8 hours ago, Maux52 said:

Has anyone else done infusions this often and for several months?  If so, can you share your experiences?

I used to get infusions as needed at the local hospital, I had a standing order. But waiting until I got bad was not helpful - I often ended up in the ER with seizures and needed to be admitted for fluids. This went on for years. Eventually my PCP and cardiologist agreed for me to get a port so I can get home infusions weekly and as needed. Getting them preventative is the key - but many docs do not agree with that. Some doc refused to give me fluids because I could drink. I am the perfect example - along with others that get infusions - that scheduled and regular infusions work for refractory POTS. -- Another important finding is that in my case the infusion does not work if given fast. I used to get 1-2 liters over 2 hours each but that only helped temporarily. Also - with Saline I would retain most of the fluid and then pee it all out, which in turn caused me to dehydrate after wards. Now I get LR over 8 hours weekly ( more if needed ) and I do not retain the fluid nor do I pee it out. I believe that the electrolytes in the RL cause the fluid to stay within the blood vessels which in return stops the ANS from trying to constantly vasoconstrict by dumping adrenaline. --- So happy for you!!!!   

[yogini]

IF you start to feel better and feel up to it, you may want to consider starting exercise.  The whole trick with dysautonomia is to get on some kind of medication and become more active if you can, even if it is just walking.  Exercise can help lead to recovery.

[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.