alexhunterus Posted December 18, 2012 Report Share Posted December 18, 2012 I'm sure everyone has heard "You have to drink a lot". I've never been much of a drinker and when i try to drink the amount I'm supposed to, I get extremely nauseous. I take Zofran for nausea but it doesn't seem to help much from what I call "drinking nausea". My doctor suggested I get an IV port put in and go to the doctor three times a week and get Saline. I was wondering if anyone has done this and was just curious of the prosess and if it really helps. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 18, 2012 Report Share Posted December 18, 2012 In my experience it helps tremendously, and I think for many others too. My specialist now offers IV saline treatment at his office for POTS patients and there are some who right now are coming in weekly or more. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 19, 2012 Report Share Posted December 19, 2012 For me it helps unbeliebably - it was a god send for me. Quote Link to comment Share on other sites More sharing options...
jkoconne Posted December 19, 2012 Report Share Posted December 19, 2012 Saline works with wonder with me. I can only get it by checking into the ER though I had a neuro apt today and asked if there was a way I could get it otherwise and he said no. He also told me that he doesnt want me dependent on it. I dont feel like I am at all. I use it when ive been super symptopatic for days or when I get sick (clod flu ect.). But for me JUST checking into the ER is $250 and thats a lot to spend when all i need is fluid to get my symptoms under control.I hope you have luck with the port Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 19, 2012 Report Share Posted December 19, 2012 Yeah ive heard that as well, ive only ever had it in bad patches every three or so years. Nothing more dangerous than a saline dependence... Quote Link to comment Share on other sites More sharing options...
Christy_D Posted December 19, 2012 Report Share Posted December 19, 2012 My son had his done at home. They sent a nurse to get it started and she checked in on day 3 to make sure everything was fine. At the end of the 5th bag on day 5, I took out the line as she had instructed me how to do and he was done. He did not get relief until the third bag which was day 3, so he did not get immediate relief. Quote Link to comment Share on other sites More sharing options...
jangle Posted December 19, 2012 Report Share Posted December 19, 2012 I've not tried IV saline but florinef is definitely helping me. Currently I'm on .1 mg/d. I'm going to try .2 mg/d as I haven't gotten edema or anything like that.IV Saline is pretty innocuous, it's just a hassle to put in and out all the time. There is some chance of pretty serious adverse effects, but with the bags they use nowadays and the techniques it should be safe.I kind of want to try it, but I'm going the florinef route as it would cost me quite a lot of money to go to the ER and then not know if they'll actually give it to me. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted December 19, 2012 Report Share Posted December 19, 2012 Until I stabilized out on plasma exchanges, I hung my own IV saline - I had a MD order for cases of IV Saline that was filled by a local home health agency - when I became weak and "goofy", I just hung up a liter of saline with a limit of 2 liters before I would have to contact the MD. I used to be an easy IV stick and am fortunate enough to work in healthcare so, finding someone to start my IV was not a problem. The saline really helps expand intravascular volume - since dysautonomia causes the blood to pool in large blood vessels, like the abdomen, the whole vascular tree tends to be floppy and collapse - IV saline helps fill up the floppy vessels and you feel better - at least for a little while. I know of patients that go in to an IV clinic for fluids up to three times a week every week. Thankfully, plasma exchange therapy has eliminated the need for routine IV saline - it is only on a rare occasion that I require a liter or two to "juice me up". Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted December 19, 2012 Report Share Posted December 19, 2012 Until I stabilized out on plasma exchanges, I hung my own IV saline - I had a MD order for cases of IV Saline that was filled by a local home health agency - when I became weak and "goofy", I just hung up a liter of saline with a limit of 2 liters before I would have to contact the MD. I used to be an easy IV stick and am fortunate enough to work in healthcare so, finding someone to start my IV was not a problem. The saline really helps expand intravascular volume - since dysautonomia causes the blood to pool in large blood vessels, like the abdomen, the whole vascular tree tends to be floppy and collapse - IV saline helps fill up the floppy vessels and you feel better - at least for a little while. I know of patients that go in to an IV clinic for fluids up to three times a week every week. Thankfully, plasma exchange therapy has eliminated the need for routine IV saline - it is only on a rare occasion that I require a liter or two to "juice me up".What are plasma exchanges and is that a normal treatment for POTS? Quote Link to comment Share on other sites More sharing options...
E Soskis Posted December 19, 2012 Report Share Posted December 19, 2012 I have an autoimmune dysautonomia (AAG) - not POTS - it still causes dysautonomia but, different in origin - so, many of the treatments for AAG are the same as for POTSPlasma Exchange = Plasmaphoresis - looks a lot like dialysis - my blood is run through a machine that separates the red cells from the plasma - the plasma is then discarded and replaced with a substitute - the theory is that the "bad" antibodies are in the plasma so, by removing them, we can slow down the disease and the progression of the disease - the red cells are reinfused. I have about a liter or more removed every other week - not perfect but, better than no treatment at all - I do not believe it is a treatment for any type of POTS - I've seen it used in MS patients........ Quote Link to comment Share on other sites More sharing options...
alexhunterus Posted December 20, 2012 Author Report Share Posted December 20, 2012 Thank you all very much my doctor has said I can start getting it but we just have to figure where to go. Feeling quite positive. Thanks again! Quote Link to comment Share on other sites More sharing options...
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