potsyturvy Posted February 9, 2012 Report Share Posted February 9, 2012 You would think it is the way my doctors around here act about it. I have a prescription from my out of state doctor for iv saline to use any time I feel especially awful (which would be now), but I can't get it filled here because it is from an out of state doctor, so I'm trying to find a doctor here who will prescribe it. However, apparently they can't prescribe it without seeing me and it will take at least a week to get in. Any doctor's office I even talk to they act all confused about what IV saline even is or why anyone would want a prescription for it and then I would have to wait too long to get a prescription anyways. Ugh! It's just saline! It's not like I'm asking for medical marajuana or something!! I just needed to rant a little, I guess if my last doctors call falls through, I will just go to Urgent Care (however they always send me to the ER the minute I say the word "heart") Quote Link to comment Share on other sites More sharing options...
jangle Posted February 9, 2012 Report Share Posted February 9, 2012 *Krrrk* Patient is asking for salt water, I'm going to need back up. *Krrrk* Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 9, 2012 Report Share Posted February 9, 2012 They don't want to give it to you because they don't think it is useful. Like why would you want saline? Also newer research is saying that drinking water is more effective than saline--according to my Dr... I've also dropped the pots when talking to people, instead I say ,"my autonomic nervous system doesn't work and there are periods of time where I need saline to increase my blood volume." Nervous system malfunction sounds more serious than pots and it is more relatable. Quote Link to comment Share on other sites More sharing options...
GingerA Posted February 9, 2012 Report Share Posted February 9, 2012 I hate to ask where you are but it seems the same way here. I can't get a do to ever prescribe saline in the first place so I don't know if it would help me or not. Quote Link to comment Share on other sites More sharing options...
GingerA Posted February 9, 2012 Report Share Posted February 9, 2012 Sorry I mean I can't get a doc to prescribe it. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 9, 2012 Report Share Posted February 9, 2012 A lot of times when you go in with a chronic illness your doctor will say the dreaded, "what can I do for you today." To which you would like to respond, " how about getting your *** in gear and helping me figure this thing out you insensitive jerk." But instead you say, well let's do a bag of saline. Sometimes a brief argument will follow, but they would much rather give you the saline and pretend to do something. I would suggest that anyone with an uncooperative doctor ask him what his plan is as an alternative, because this nothing crap isn't working for me. **works every time-- I also used this method to get approved for my mayo referral. Quote Link to comment Share on other sites More sharing options...
shoegal Posted February 9, 2012 Report Share Posted February 9, 2012 is there way of explaining how the saline helps so the docs may actually do this for me? cause I can get codeine easier than saline and it makes NO sense Quote Link to comment Share on other sites More sharing options...
yogini Posted February 9, 2012 Report Share Posted February 9, 2012 That happened to me when I tried to get it during a flare. Drs don't understand its benefits and that its not the same as drinking. Also, most docs couldn't don't have it in their office. Getting it would mean going to the hospital in most cases, which costs $, making them more reluctant to give it. I hope u are able to find a way to get it! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 9, 2012 Report Share Posted February 9, 2012 its because its a pain in the butt to do for you and they cant be bothered becasuse they cant see why it would help.Also newer research is saying that drinking water is more effective than saline--according to my DrReally? Funnily enough there are three clinical trials going on right now indicating the opposite. I love when doctors say kinds of gems. There is currently only one published research paper talking about oral volume loading and all it showed was that it increased blood pressure in OH patients. Alternatively there are three published research papers that talk about intravenous saline infusions in POTS, one of which found that 1 litre of saline over 1 hours was superior to all other therapies tried - including midodrine - in controlling the tachycardia and subjective symptoms in POTS patients.Further there is research now that indicates that the subgroup with elevated angiotensin II have a biochemical reason that their body cannot maintain their blood volume above an abnormal low set point and vanderbilt are now confirming a preliminary finding that in some POTS patients there is abnormal postural dopamine levels that are causing the kidneys to extract salt and reduce plasma posturally.I hope people realise that what doctors often tell you about POTS as fact is often based on subjective opinion, clinical experience and preliminary findings. For every fact that a doctor might tell you about POTS you can find other research groups demonstrating or at least suggesting the opposite.The support for Mayo's hypothesis that all POTS is neuropathic and relates to autoantibodies against a3 acetylcholine receptors is not overly compelling. Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted February 10, 2012 Author Report Share Posted February 10, 2012 When I had saline before, I could tell a huge difference in symptoms. I had so much energy and felt "normal" for a couple of days. I guess I'm just going to have to wait a week to see someone to get the saline re-prescribed. I guess I could go to the ER but there is no guarantee they'd do it for me either. Any suggestions on what to do while I'm waiting for saline besides drinking a ton and eating tons of salt?Jangle-- your post cracked me up!! Thanks! Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted February 10, 2012 Author Report Share Posted February 10, 2012 Ginger, I have a feeling doctors are like this everywhere. I live in a small town so it is hard to find good doctors and they are usually so overbooked, it's hard to even get to talk to a doctor. All of my good doctors are out of town or out of state. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 I wish Id tried saline sooner as its absolutely amazing and for me it is probably the best therapy ive tried - I also felt almost completely normal afterwards. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted February 10, 2012 Report Share Posted February 10, 2012 Saline is a typical solution for orthostasis. If they won't give it to you, tell them you've been pooping for the past 24 hrs straight. You can even throw in vomiting for good measure. But beware of the famotidine injection. Also have them do orthostatic vitals. If they are off you can say, "see I am dehydrated, I need saline" Saline is typically given to me in the infusion room of my drs office and they don't want anyone to know about it. I guess if people did know about it, then they'd all.come in for hangover cures I also get it at urgent care after hours. I just say my pots is flaring and that I need a bag of fluid to combat the tachycardia. Getting saline is a slippery slope though. It only helps for about 24hrs 48max and then you are back to your potsy self. And I could see building up a tolerance to it. So I save it for when I need it, which ends up being about once every 3 months. Also, saline does have its risks- infection, flebitis, infiltration etc. Any time something breaks your skin barrier its a risk. And I imagine picc lines have an even higher risk. When I was working for assisted living here was a guy there whose catheter site had gotten infected without anyone knowing it. The resulting consequences looked like the scene from a horror movie. 2 days later, I came in on my first round to catch him hyperventilating with a pulse of 180 while laying down. The infection from the catheter had gotten into his blood stream and when I found him he was in septic shock. Quote Link to comment Share on other sites More sharing options...
issie Posted February 10, 2012 Report Share Posted February 10, 2012 Further there is research now that indicates that the subgroup with elevated angiotensin II have a biochemical reason that their body cannot maintain their blood volume above an abnormal low set point and vanderbilt are now confirming a preliminary finding that in some POTS patients there is abnormal postural dopamine levels that are causing the kidneys to extract salt and reduce plasma posturally.Does it indicate if they think dopamine levels are too high or too low? I haven't seen the study. Can you post it? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 it isnt published yet - review it at clinical trials website.I think saline is probably most beneficial in acute exaccerbations - gets me out of a POTS hole if I get one a week for say three or four weeks. I try taking licorice to hold onto it but it never lasts (longer than 48 hours max). But my body feels SOOO relaxed after an infusion. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 Doc was telling me that I shouldnt worry about gettin gsaline at the ER because most weekends when he used to work there all the people on saline were alcohol poisonings! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 10, 2012 Report Share Posted February 10, 2012 and vanderbilt are now confirming a preliminary finding that in some POTS patients there is abnormal postural dopamine levels that are causing the kidneys to extract salt and reduce plasma posturally.Does it indicate if they think dopamine levels are too high or too low? I haven't seen the study. Can you post it?I was going to ask the same thing. Both my standing norepi and dopamine were elevated. I'd heard about norepi before, but wondered if the dopamine meant anything. Watch, it'll come out that they found dopamine levels are reduced in POTS. LOL. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 Minor increases in peripheral dopamine could potentially trigger d1 receptors in the kidney leading to sodium wasting from the kidney, reducing blood volume balance. its important to recognise (before any one jumps to the next conclusion) that this is peripheral and not CNS dopamine levels. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 10, 2012 Report Share Posted February 10, 2012 its important to recognise (before any one jumps to the next conclusion) that this is peripheral and not CNS dopamine levels.What does this mean? Quote Link to comment Share on other sites More sharing options...
yogini Posted February 10, 2012 Report Share Posted February 10, 2012 Rama, are they testing saline on patients who don't respond to other treatments or patients in general? My knowledge is dated by several years, but last I heard it was quite controversial, because the risk of getting a port or other semi permanent way to get the infusions on a regular basis ran a high chance of sepsis. Doctors used to think it wasnt worth the risk except in the very worst cases, where one had PAF, etc. In fact several on the forum have had very scary encounters with sepsis. I thought you couldn't get ongoing saline through regular IV, because eventually you'd have no veins left. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 10, 2012 Report Share Posted February 10, 2012 Sorry Naomi - just making the point that excess dopamine may not automatically result in CNS symptoms as some people have suggested in the past Not a reponse to you.Rather than suggesting people get intravenous saline all the time or ports, they are looking into why saline seems to in some patients have a far superior response than oral ingestion of fluids and salts. If they can work out the defect it might be treatable thus saline wont be required.If think this work relates to patients that appear hypovolumic or respond well to saline?? Not sure. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 10, 2012 Report Share Posted February 10, 2012 OH! Ok, gotcha. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 10, 2012 Report Share Posted February 10, 2012 I don't think I am hypovolemic, but responded very well to saline the one time i had it. I think for those of us not hypovolemic, our bodies may mimic symptoms of hypovolemia. Would be AMAZING if they could figure out WHY it works so much better than drinking! Quote Link to comment Share on other sites More sharing options...
we_don't_look_sick Posted February 10, 2012 Report Share Posted February 10, 2012 It is difficult to get an iv.IV's work well for me, maybe I think of this too simplistic: IV builds blood volume fast and efficient vs digestions slower and less efficient manner. How could it not be that simple?Nothing else is simple with us, but an iv being a major help for some of us seems very simple. But I haven't had an iv in a while and I don't get much blood to my brain... Quote Link to comment Share on other sites More sharing options...
potsyturvy Posted February 10, 2012 Author Report Share Posted February 10, 2012 I wish researchers would figure out why saline helps so much more than just eating and drinking salt and fluids. I don't get regular IV saline, but I'm in a rut right now, and need some help getting out.Rama- If I went to the ER, they'd probably think I was drunk since I can't walk straight thanks to dizziness! lol Quote Link to comment Share on other sites More sharing options...
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