IV Treatment

[halbashes]

Some forms of Dysautonomia have been known to respond to IV Saline therapy.  What is your experience with this?  Elaborate below if you will like.

[evo123]

My urinary output is the same!!!!  But mine is colourless.  My docs say I have a higher output than normal but believe it's all related to the POTS. But it is worth looking into x

[enzymelover]

       Hi.  I know you've had dysautonomia for a long while now, but are your doctors sure you don't have D. Insipidus? Have they ever given you a trial of DDAVP (vasopressin hormone) to see if it makes a difference with your urine output? It seems to me it would help you.
Thanks for being so open with your condition. Not TMI, every little bit may help someone find the answers they need.

[Heiferly]

Yeah, I'm in the fed up with having to hit the hospital to get tanked up on IVs camp here.  I've had the PICC/port talk with my docs (especially my local cardiologist, who seems to be the one that would ultimately make the decision) a great many times, and I think we're finally getting to the point of deciding on the port.  *I* would've decided on it over a year ago, mind you, but as evo said, the docs weigh the risk of infection more heavily whereas I think the benefit to my quality of life would be worth it.  At any rate, I think I'm finally "sick enough" that I'll be getting my port now.  I think it will be SO much better to have my home nurse do regularly scheduled IVs than to land at the hospital needing 3-5 bags at a time just to limp back out again.  I mean, by the time I get bad enough to convince myself to even go there, I'm in such bad shape it's not even funny; one time toward the end of last year my BP was actually still going DOWN after they ran the first 2 bags!  The docs in emergency at the hospital couldn't believe their eyes!  I don't know how that was even possible, but frankly I think it only highlights the fact that some of us really need the regular IVs.  Plus, if you look at where Uncle Sam is putting his research $$$$, Vandy is still doing studies on plain ol' saline.  I really doubt they'd be funding more of these studies if it weren't a valuable treatment (and in comparison to trying to take in fluids/electrolytes orally, at that).  The fact of the matter is that studies have shown renin/angiotensin/aldosterone abnormalities in some types of dysautonomia, which affects the way fluids are handled by the body and easily explains why some patients may not be able to keep up with their urine output by oral intake alone.  Add to that the constant nausea that many face which discourages *chugging* beverages, and any additional dehydration that may come from bouts of vomiting or diarrhea and the utility of saline IVs becomes rather obvious.  

This may be TMI, but my final note here is that despite everything I drink (4 L a day!), I swear my pee is so concentrated it smells like cat pee most of the time!  Ewww!!  I don't know WHERE all the fluids I drink go, but I need MORE!  And now I'm making kidney stones!  :-(  I should think the fact that my kidneys are concentrating stuff so much that it has the opportunity to turn to ROCK is pretty good evidence that it needs a WEE bit more dilution, LOL.  So yes, by all means, I WANT THE TUBES.  Hehehe.

[LivingInHope]

I've seen others post about this before.  I don't know what to think about it.  The docs seem to feel in general with dehydration that natural fluid intake is best.  But our problem seems to be that we might be hypovolemic or our sodium balance is off or something.  Some days I feel like I'm thirsty a lot and there are days where I feel like I need to go eat some salt & urine can be dilute.  But I've never asked for IV therapy and probably would get a blank stare if I did.    

The only times I've had IV therapy was for dehydration (supposed or real like when I had diarrhea a lot).  And whenever they do a bolus fast drip on me, it makes me shake a lot and I think my tachy gets worse, so I now ask for a slow drip when I get an IV.

[evo123]

When I have recieved IV I have felt literally 'great'.  I have recently asked my cardio if I can have this as a form of treatment, but with no luck.  He did say I can have it when things are really bad, soooo....when I am I just have to find the strength and the 'ability' to stand up to get there!!!

I have heard LOTS of positive talk from Dysautonomia patients regarding this and wish that our doctors would seriously consider listing this as a 'standard' form of treatment.  I know there is the risk of infection but I would gladly take this risk if I had the opportunity.