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.
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.
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.
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.
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: In diabetes insipidus, the urine keeps coming and coming, even if you stop drinking. So it doesn't sound to me like the answer to Heiferly's issue. I proved to myself I didn't have it when I was doing fasting testing and had not drank for hours & had almost no urine & very concentrated that morning- I figured, if I had diabetes insipidus, I would have still been going a lot, in spite of withholding fluids from myself.
Heiferly- regarding those kidney stones, have you had the calcium level in your water checked?
I suppose I will chime in here as well :)
I would be in favor of doing this..For Certain....if it would help me to feel better!
Question?? Is iy specific for certain AD's....Like has it only or does it only for POTS?
What about NCS?
And as long as we are talking about Pee = Mine too is pretty clear..usualyy color of toilet water, sometimes a shad or 2 darker but rarely....There I said it..No all knows about me urine..LOL
So sorry that your urine is so concentrated...Yah, I agree...Just where are all the fluids going that tyou are consuming?? Do you get swollen?? Retain fluids??
Is it just a saline IV or is there other stuff in there also? When I have had saline IV for any reason I have felt incredibly good. I have thought about the port b/c my old doc, who retired, was doing those. But I am nervous about infection. I don't faint though so I think that if I were in your shoes I would do the same thing. I hope you have recovered from the recent fall and seizure. :)
I've been through a few bouts of polydipsia (excessive thirst) where I actually was so desperate to take in fluids that I had to look up the limits of how much fluid can be taken in per unit of time before you hit water toxicity. (Yes, you can actually cause brain damage or even death with plain old water. And I was thirsty enough that this was a legitimate concern. Oy.) Because of THAT, diabetes insipidus was definitely considered (and thoroughly ruled out) a long time ago. We literally have no idea where my fluids go, as when I get a bunch of IVs you can see the puffiness from all the fluids (say if I get 5 in 24 hours), but I don't really seem to have fluid retention from my oral intake. Also TMI, but I have IBS-C (as opposed to the mixed or diarrhea-prevalent kind of IBS, so I've assured my docs that it is NOT ending up being lost in my stool). I seem to sweat less and less every year since I've been sick also, and my home health care team comments frequently on my freakish ability not to sweat, so it's not going out that way either. That leaves ... the moisture in my breath? Maybe I'm exhaling PURE STEAM!! LOL Who knows?
As for the kidney stone, SurgiM., only 30% of it's composition was the common type of calcium oxalate stone. The other 70% was something else, which my doc said raised suspicion of parathyroid problems. BUT the results from my blood tests for that just came in over my computerized hospital account late last night and it looks rather negative to me. (Though my ALT is up again, ugh.) So, it not being parathyroid, apparently I'm just making mystery rocks. :-p I dunno, my plan is to pester my cardiologist about the port hoping that pushing more fluids through my kidneys will keep things dilute enough to prevent more stones from forming. I didn't *really* want parathyroid surgery anyway.
Laura, yeah, just plain ol' saline. The first time I got a round of saline bags for a bad dysauto crash, I seriously thought I was ready to dance a jig back out of the hospital. It may just be saline, but that temporary volume expansion feels GLORIOUS when you're so accustomed to plummeting BPs and tanking cerebral profusion. Which, btw, Tonya, makes me think it would work for NCS as well because it's the cerebral hypoperfusion that knocks you out in syncope so volume expansion would keep more steady pressure up to your head I would think. (Of course, I've been wrong before, so don't hand me my honorary MD yet, LOL.)
OMG, the most lecherous spider crawled up over my desk whilst I was typing this post and I sat crouched like a coward on the floor for ten minutes watching him and waiting for my home health aide's shift to start so she would kill it for me. I'm such a coward and EWWWWWW, spiders are ICKY! (Yes, I'm in my 30s and I'm still afraid of spiders.)
Have they estimated a GFR on you lately? Just the other night, I was laying in my bed in the semi-darkness and saw a spider descending right above my head on a web! I got my shoes and clapped them together and then carried the shoes over and squished it. It really made me feel kind of in shock and I thought of telling a relative of mine but she has a bug phobia already, so decided not to.
What you said in your post towards me...I am going to call on Monday to discuss w/ ElectroPhysio doc. Do you think that a my regular Cardiologist would be "Up" on this or is this usually out of their league??
As Always, Thanks for the Info :)
AND..if I were there, I would have smacked that spider for you...Yep! bare handed...I am not afraid of spiders but snakes really Creep me out! Lol
I just got through reading back all the post on this poll.
Oh my gosh!!! PLEASE excuse my spelling errors! I used to be the best speller.
But now, my fingers and brain do not coordinate and i am getting letters mixed up kinda like dylexia? .....perhaps due to lack of oxygen to brain and having cognitive problems from the Multiple Sclerosis??
Have a Great weekend Everyone ;)
I think you just gave me some homework for the weekend. ;-)
Tell you what, barring unforeseen dysauto crashes, I'll find an hour or two to pour over the articles on my external hard drive and see what I can dig up for you that would be pertinent to this. I have an entire folder of NCS journal articles on there; I just need to dig through them and see if I can find what I'm vaguely remembering. OH the BRAIN FOG!! But I'm pretty sure that I have at least one article that might be useful in giving you some "talking points" with your doc(s). I'll let you know what I dig up.
Happy weekend all!!!
WOW! Thanks :) Much appreciated and then some ..Lol
Sorry you are having some "crashes" going on :(
Hope tomorrow will bring you a better day.
If you are up to it I would love to hear these talking points. I might have found a local doctor and am praying!
Any progress getting your port for IV's?
Sorry I fell so behind on this folks!! We hit some hot weather here in Ohio and I just now got my A/C setup (you can see the rush of posts from me just recently trying to catch up, LOL) ... prior to that I'd been trying to hit my computer in short spurts and then head back to the bed to get horizontal before I got too sick ... which didn't allow for the kind of digging required to get these articles. I need a secretary to organize all the journal articles I have, LOL!!
Okay, for anyone who doesn't have it, one of the best journal articles describing syncope is by Dr. Grubb and you can get that here:
From that, you can get the description of how your blood volume shifts when upright, and how cerebral perfusion is linked to NCS. (If I'm remembering the right article. Sorry, I really don't have time to re-read these all cover-to-cover as I'm digging through them. For every one I post here, I'm digging through multiple folders of about 10 or more articles, so please bear with me.)
For those with POTS, this article talks about blood volume regulation. Hypovolemia (low blood volume) is a reason for getting IV saline, which temporarily expands blood volume:
Here's an article describing a (successful) clinical trial of saline IV on POTS (to the best of my knowledge, as is the case here, in the US these studies have been conducted at Vandy; there have been several):
IV Saline for POTS discussed here under "Non-Pharmacological Treatment of POTS" (btw, this article briefly touches on ablation being potentially harmful as a treatment in POTS patients ... I know some people on this forum ask about that so if anyone is looking for info on that, there it is ... I can never find it when I'm looking for it, LOL ... it's BURIED in there ... I need to make a "key" to these or something):
Not a free article, but if you know someone with medical library access (or want to ask your local library to procure the article for you for a copying fee through interlibrary loan--should cost less than buying it outright through this website), here's a Mayo study on POTS that included IV saline as one of the tested interventions:
Not forgetting about the NCS-ers!! Here's NCS and IV saline in a clinical trial:
IV saline in another clinical trial of NCS:
Okay, that's what I found today. If there's more on here, I'm not seeing it at the moment, sorry. Oh, and Laura, I don't know yet about the port ... I haven't seen my cardiologist yet since the kidney stone, which I'm hoping is my "ace in the hole," so to speak.
I hope those articles are helpful!!
Have a great week everyone! Let me know if there are any questions about those articles,
You are amazing! Thanks for all of that info. It is very much appreciated.
Now go and rest!
My delima with the saline is that I don't want to get a port. My dr. doesn't think my insurance will pay for it and I would have to go into the office to do it. Plus the effects only lasts several hours.
Yeah, some patients do go into a clinic/dr's office to get regular IVs ... others have gotten approval to get "regular" IVs run by a nurse in the home environment (i.e., without a PICC or port). The concern there would be how sustainable this is over the long run without eventually running into a point where the veins are too damaged to provide good access.
As far as the effects, I think it varies by patient depending on a number of factors. My personal experience is about 2 days of benefit. That's from 2-5 bags at one go, though, depending on how severe my needs are at the time. Of course, I'm keeping up with my 2L/day oral intake plus salt loading (and fludrocortisone for retention) on top of that.
I think it's a highly personal decision based very heavily on weighing the risks involved, the hassles involved, and the potential level of benefit to be gained. For those who are most profoundly disabled, there is likely the most to be gained and thus a greater willingness to take risk and make sacrifice, particularly if there are risks involved in NOT getting the IVs (such as continued injuries from repeated syncope). I know a few of us on this forum have had pretty significant head and/or neck injuries in the past and would rather try something like this than give in to our families' pleas to don motorcycle helmets and neck braces round-the-clock. :-p
Thanks for the info. BTW, I don't know how many bags I have had before so maybe more would have helped me for longer. I totally support your decision to do the port and would likely do that if I had frequent syncope and significant injuires.
For Heiferly and anyone else: do you know what diagnoses has been used to get the IV paid for?
I know when I've had just one-time treatments at the hospital they had either or both of the following diagnoses listed: hypovolemia and/or dehydration. They also listed orthostatic hypotension as well sometimes. I have never had regularly scheduled IVs, though, so halbashes is the one I can think of off the top of my head to ask about that since she's getting them at home these days. She may know what diagnoses they listed or be able to ask. (Feel free to send her a PM if she doesn't see here at the bottom of the thread that I'm "summoning" her, hehehe.)
As a sidenote, I find that a lot of times when I'm getting IVs I'm usually at the point where I'm pretty out of it, but sick as I may be I have picked up on a little "trick" they use to keep track of the bags of saline at the hospital (as different nurses and docs may be in and out and this keeps everyone on the same "page") and I'm guessing they probably do the same sort of thing at other hospitals too. If you look up at your IV bag, anytime they order more than one bag they'll mark each bag with a sharpie "#1" or "bag 2" etc. so that any nurse/doc that comes in knows if another bag still needs to go up when that one runs empty. It's a good system, and no matter how sick you are, you can usually stay "tuned in" to how much they're pumping into you by glancing up and noting the number on the bag. (My home health aide who also works at a hospital just confirmed that this is indeed common practice at different hospitals.)
In case I've never mentioned it before, I completely love you! Best researcher ever!!! I am so printing those!
I have polydipsia episodes as well, and they come out of completely no where. Even while I'm sleeping, which is highly annoying because it's like, "oh, I guess I can't sleep tonight, my body has spontaneously decided that drinking all of the liquid on the continent is required to sustain life". My doctor wrote out my weekly IVs for dehydration from nausea/vomiting.
I know this topic is over a year old, but I just wanted to let you all know I am a POTSy on daily IV saline through a chest port and I LOVE IT. It has changed my life for the better. I tried drinking 3 liters of gatorade, coconut water, salt pills and water per day, but it didn't help. It's like it went right thought my GI tract if you know what I mean - nothing was absorbing into my body. Plus, I have a hard time swallowing liquids since all of this autonomic stuff started happening to me, and I was choking all the time when I was trying to get down all those fluids. Not fun, and potentially dangerous. So I got a PICC line in early 2011, and then switched to a chest port this month, which I am very happy about. Risk of infections is lower with chest ports, and they are less intrusive. I get 1 liter per night as I am sleeping and on "good" days I can skip one night.
My insurance (Empire Blue Cross/Blue Shield) is paying for it and my doctors are supporting me in getting it.
Check out my blog if you want to learn more about saline therapy or get in touch with me: www.potsgrrl.blogspot.com