Saline IV

[erinlia]

One thing ive never tried for my POTS is a saline IV.  We recently had a business open in town where you can request various IV vitamin treatments.  It seems like an easy, inexpensive way for me to try a saline IV.   any advice?? Should i just do saline and how much?  It looks like they offer one liter.  Is that enough to test if it will help my POTS, or should i see if they will be willing to do more?  Have saline IVs been helpful for you?  

[erinlia]

I think i could choose between saline and lactated ringers and they give one liter in a half hour appointment.  Is one better than the other to try?  And should i see if that could be slowed down?  It seemed like from a couple posts that IV speed matters for you.  

[Sarah Tee]

My specialist ordered two litres of saline over four hours. I only managed to have it once, but am hoping to resume it soon.

Dr Satish Raj has done a bit of research on saline’s effect on POTS symptoms. If you look at the “methods” section on one of his research papers it will probably state how much was administered over what time period.

Judging by posts and blog articles from dysautonomia patients that I’ve read over the years, slower is usually better. Half an hour seems a bit fast.

[erinlia]

Thanks thats really helpful 

[Pistol]

@erinlia I get IV Lactated Ringers twice a week and I know that I need to run one liter over at least 4 hours to get effects. Faster infusion will result in the fluid pushing from the vessels into the tissue, meaning I swell up and then pee all of the extra liquid out. The slower the infusion the longer the fluid will stay in the blood stream ( if that makes sense ). 

I doubt they would accommodate a slower infusion rate, and one liter over half an hour could even be harmful to you ( IMO )

[erinlia]

I tried the saline IV.  They were willing to slow it down to one liter in two hours.  It did seem like it helped! For that day.  I had some energy and didnt feel so much pressure in my chest and head.  I could lift my arms without my vision going gray. By the next day i was definitely back to my usual.  I really wish i could just buy IV equipment and hook myself up to a saline IV every morning before i get out of bed.  It doesnt seem worth paying for the IVs if the goodness doesnt last long.  But now that i tasted a few hours of relief I feel frustrated with the constant drain of POTS symptoms.  I get so used to the symptoms being normal.  

[Pistol]

@erinlia I am so glad it helped, even if just for a day! Before my port and twice weekly infusions I had a standing order for 2 liters weekly when in a falre. It turned out I needed them regularly. Two liters rebalanced my ANS and I would be good to go for a little while. Lactated Rind]ger solution - which I have been getting - seems to have a longer lasting effect because the electrolyte mix seems to prevent me from peeing it all out, so I seem to have more blood volume longer. Maybe worth a try?

[Sarah Tee]

@erinlia I just saw your post - sorry I'm a bit late replying.

There is a research study that found that some people who had regular infusions for a few months and found them helpful "in the moment" eventually ended up with a sustained improvement in their symptoms after they stopped the infusions.

I just can't find the right search terms at the moment to link to the study. Maybe someone else can link it.

(I seem to recall that the patients documented in the study were on the younger side, although I may have that wrong.)

I had my second infusion at the nearby hospital (third overall) with no effect. My specialist is trying me on albumin next week. If that doesn't work, that's the end of infusion options for me. (He said that if I got no benefit from normal saline, LR wasn't worth trying. If I had had any benefit from the saline he might have tried the LR.)

I'm sorry you only got a brief improvement. Probably a silly question, but have you and your specialist thoroughly explored all the volume expansion/retention options? Maybe none of these worked because you need the fluid to bypass your RAAS, but just thought I'd mention it.

Although it's frustrating the good effects didn't last beyond the rest of the day, perhaps you could get an occasional infusion on the morning of a special event or when you are under the weather with a passing bug or other "normal" everyday illness.

I recently felt normal again for a few days while taking steroids for an unrelated allergy. It was a very odd feeling. Tasting a short period of remission certainly brings up mixed feelings!

[Sarah Tee]

Here is the study I was thinking of:

https://link.springer.com/article/10.1007/s00246-015-1274-6

Full text:

https://sci-hub.se/https://link.springer.com/article/10.1007/s00246-015-1274-6

(May not display properly unless viewed on desktop. Clicking/tapping "save" button below bird icon may allow download of PDF version.)

It was adolescents and young adults.

[erinlia]

Thanks Sarah, thats helpful. You asked " have you and your specialist thoroughly explored all the volume expansion/retention options? "  I doubt that we have.  What are all the options for this?