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492869 tn?1285018933

IV Treatment

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.
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612876 tn?1355514495
Can you clarify what you mean by temperature control?  Do you mean using fluids in emergency situations like hyperthermia or what??  
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Avatar universal
I am trying to find info on use of IV fluids for help with temperature control with dysautonomia. You all seem pretty knowledgeable. Can anyone help me out?
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Avatar universal
My daughter has severe ME/CFS and P.O.T.S. she is having twice weeky IV's of 1 litre of saline and is markedly better for about 1-2 days after each infusion. She goes from grey pallor unable to speak coherently to being able to hold a short conversation. We are going to try subcutaneous saline as she needs more than twice weekly saline and the local hospital sees this as preferable to a PICC. Has anyone else tried this?
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612876 tn?1355514495
I did have radionuclide hemodynamic and blood volume testing at Cleveland Clinic.  While I know blood volume testing is routine at the big-name autonomic clinics that you and I went to, I'm not sure about people's experiences trying to get blood volume testing at smaller hospitals and/or at hospitals with no dedicated autonomic clinic.  That may be a significant barrier to people knowing whether they are hypovolemic or not:  simply whether there is access to the test.  

In my case, I do know that at the time that I was tested (which is now quite outdated) I was just holding my own at normovolemic with all my meds (including fludrocortisone) and fluid- and salt-loading, and they wanted me to have a little more volume than that ideally.  From what I can tell, my volume does fluctuate because there are times that I have taken as much as seven or so liters of IV saline in one trip to the emergency department for dehydration/hypovolemia treatment to stabilize my blood pressure and symptoms.  Cleveland does want me back up there for reassessment of my blood volume to decide whether IVs would be indicated or not (or at least that was my understanding as it was communicated to me by my cardiologist), so I'm supposed to be scheduling my next follow-up there, but I've put it off due to other neuro stuff that I'm trying to handle at my local hospital first.
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Avatar universal
TO everyone why is it that they don't give you a blood volume test. I went too Vanderbilt and they did one on me , My dr here thought I was hypovolomic, and my blood volume test actually came back too high I had too much blood volume I wonder if I ws drinking myself into fluid overload. I since cut back on my volume of fluids and I don't pee as much, I don't feel better but at least I know my problem is not low blood volume.
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Avatar universal
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
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492869 tn?1285018933
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.
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612876 tn?1355514495
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.)

-H.  :-)
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Avatar universal
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?  



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612876 tn?1355514495
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
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Avatar universal
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.  
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Avatar universal
You are amazing!  Thanks for all of that info. It is very much appreciated.

Now go and rest!
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612876 tn?1355514495
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:

http://circ.ahajournals.org/cgi/content/full/111/22/2997

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:

http://circ.ahajournals.org/cgi/content/full/111/13/1574

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):

http://circ.ahajournals.org/cgi/content/full/96/2/575

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):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

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:

http://www.springerlink.com/content/h4152621g7324743/

Not forgetting about the NCS-ers!!  Here's NCS and IV saline in a clinical trial:

http://content.onlinejacc.org/cgi/content/full/33/7/2059

IV saline in another clinical trial of NCS:

http://archpedi.ama-assn.org/cgi/content/full/152/2/165

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,
-Heiferly.

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Avatar universal
Any progress getting your port for IV's?
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Avatar universal
If you are up to it I would love to hear these talking points. I might have found a local doctor and am praying!
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560501 tn?1383612740

   WOW! Thanks :)  Much appreciated and then some  ..Lol

Sorry you are having some "crashes" going on  :(
Hope tomorrow will bring you a better day.

Thanks again,
~Tonya
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612876 tn?1355514495
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!!!
-Heiferly
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560501 tn?1383612740

   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  ;)
~Tonya
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560501 tn?1383612740

  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

~Tonya

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875426 tn?1325528416
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.
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612876 tn?1355514495
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.)
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Avatar universal
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. :)

Laura
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560501 tn?1383612740

  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

    Heiferly:
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??

~Tonya
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875426 tn?1325528416
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?
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