ChristinEdwards Posted May 8, 2017 Report Share Posted May 8, 2017 Hi all! I'm new to the forum and I'm curious about anyone's experience with iv saline/hydration therapy. I have "very severe" pots according to my EP and no medications have been able to give me relief. (Diagnosed for 4 years now. I suspect possible EDS) My resting pulse is about 80 and my standing is 170+. (Without medication... I cannot tolerate any exercise) I was on bystolic at 5mg and propranolol 10mg 2 times/day and they both made my blood pressure drop to the point where I couldn't speak. (I have paradoxal reactions though and am extremely sensitive to medications) I've also been on Wellbutrin and tried 10g salt/day. I drink 3-5 liters of water... I'm 19 and had to drop out of university because of the severity of my symptoms. Has anyone had similar experiences or has anyone had success with iv therapy? Any and all knowledge is greatly appreciated! I'd like to hear what has worked for you all. Quote Link to comment Share on other sites More sharing options...
Pots1990 Posted May 8, 2017 Report Share Posted May 8, 2017 Hello and welcome am new to i also have pots i am on no meds i drink looooots water and eat extra salt seem to not help . I am housebound exept for hstpl app and one day on sofa of my sister in law i cant walk far i am only 27 i have two children witch i struggle to look after clean house bath etc but i put there needs before mine as most mums do ha ? The beta blockers lowered my blood pressure didnt ever touch my heartrate just made me feel ten times worse they offered me calciam channel blocker they seen to lower bloodpressure as u might gathered i allready got real low blood pressure ha I have been looking into the iv sailne i am in uk they dont seem to want give it out quite so easy as every test i had at hostpital for my heartrate only ever goes to 149bp yet at home were i do more it ten times worse 176/193 for five min once..hope u get this i found this video helped.. hope help you to xxxps sorry i babble ?even on msgs Quote Link to comment Share on other sites More sharing options...
marcus99 Posted May 8, 2017 Report Share Posted May 8, 2017 No personal experience here with saline IV, but this link has a lot of information on it: http://standinguptopots.org/treatment/iv Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 8, 2017 Report Share Posted May 8, 2017 Hi -- here is new research from Dr. Grubb on Treating Refractory POTS with IV Saline https://www.researchgate.net/publication/313506555_Effects_of_intermittent_intravenous_saline_infusions_in_patients_with_medication-refractory_postural_tachycardia_syndrome Welcome to the forum! Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted May 10, 2017 Report Share Posted May 10, 2017 I have been getting saline IV treatments for almost 2 years now. It was recommended by a POTS doctor that I see. I was first getting them at the doctor's office, but now I get them at the Hydration Clinic that just opened up near me. More and more of the larger cities are opening Hydration Clinics and you can call that day and make and appointment and they will even come out to your house. Like you, I am VERY sensitive to medications and even the IV has some side-effects for me. My BP can fall pretty low 80s/50s and my HR can go high (130-150bpm) at times. I also experience debilitating fatigue. Because I am so sensitive, I started only getting 1/2 bag of saline each time. I have them run it very slowly. Sometimes about an hour after the IV, I have an episode. For the first 3 days after the IV, I feel worse. I have less energy, typically sleep worse and can have weird symptoms like increased shortness of breath. I almost always get severe depression from the IV for one day and cry and feel so down. It's a really horrible side-effect and quite scary. That being said... after that 3 day period, I see an increase in my energy (10-30%) for about 8-10 days. I feel more able to do things and my mood and outlook are better. I literally feel like my depression is completely gone during this period, which is huge for me. It is very rare for me to have an episode during this period, it kind of holds them at bay for awhile. Over time, it has reduced the intensity of my tachycardia episodes. I've worn a HR monitor for years now. When I used to have attacks, my HR would be 135bpm-150bpm which is horribly scary. Now, I still get episodes (less than before), but my HR doesn't go up as much!! I haven't seen it go above 125bpm in over a year and most of the time it doesn't get above 110bpm which is HUGE. I feel it's all due to the saline IVs because I went for 10 years and nothing had helped the horrible HR episodes. I get the IVs about once a month. I hate how badly I feel for about 3 days, but it's nice to get some symptom relief. It's not a cure-all, but it has helped me, more than anything else I've tried. I think my condition must have something to do with blood volume because of how much better I feel after the IV, but I still haven't found a way to fix this frustrating illness. You can see what works for you in terms of an IV... experiement with the amount (you can even do smaller 100ML bags) and the speed. Also look for a Hydration Clinic near you! Good luck Quote Link to comment Share on other sites More sharing options...
Roxy Posted May 11, 2017 Report Share Posted May 11, 2017 I had a chest port (power port) put in about a year ago, best thing ever! I have been getting 1 1/2 bags of saline two times a week during the cooler months and 2 bags twice a week in the hotter months for about 2 years now. Prior to that I received IV fluids on and off for 2 years as needed. ( I am a hard stick and terrible veins) It has helped a lot, I don't end up in the ER as much as I used to. I still feel crappy but am able to do little things now, not just lay in bed all the time. They are still trying to figure out all my issues/diagnosis. It has been good for me. Quote Link to comment Share on other sites More sharing options...
Weyland Posted May 11, 2017 Report Share Posted May 11, 2017 I've had IVs many times in the er . I really feel no better afterwords. I still feel like garbage. My hr still takes off as soon as I stand up. Are you guys getting lower hr rates after your IVs ? Quote Link to comment Share on other sites More sharing options...
Roxy Posted May 31, 2017 Report Share Posted May 31, 2017 The IVs manage my peaks and valleys I don't get so many highs and lows, it stabilizes me a little bit. Works better for me, meds really mess me up. Quote Link to comment Share on other sites More sharing options...
chefgirlrd Posted June 1, 2017 Report Share Posted June 1, 2017 I just recently started getting IV Lacted Ringer's infusions and I cannot tell any difference in the way I feel. I am only getting 500 ml and am going to talk to my doctor about increasing to 1L to see if that makes any difference. Beta blockers made me feel worse, too. I think I have learned that what in theory should help does not always help in real life. Quote Link to comment Share on other sites More sharing options...
Sophie96taylor Posted September 8, 2017 Report Share Posted September 8, 2017 I take Deralin and fludrocortisone for my pots (while it does slow my heart rate) the side effects of them I feel are much worse than what the pots brings on itself alone I feel terrible on this medication,I've had good experiences with iv saline in the past and it has seemed to help me a decent amount with my pots. How does one bring it up the topic of I've saline treatment to your pots doctor/cardiologist?? Quote Link to comment Share on other sites More sharing options...
SammyJo Posted September 10, 2017 Report Share Posted September 10, 2017 Sophie96taylor What symptoms are you experiencing from the fludrocortisone/florinef? Quote Link to comment Share on other sites More sharing options...
shan1212 Posted September 11, 2017 Report Share Posted September 11, 2017 I've been getting fluids weekly at a new hydration clinic for the last couple of months. In the past I would get them through my doctor during my "summer slump," but he has gotten more patients and it's harder to get in with him. The people at the clinic have been great at working with me, and it's so much nicer to pop in whenever I want versus setting up an appointment an dealing with a doctor's office. I also get a Meyer's Cocktail of vitamins along with it. Quote Link to comment Share on other sites More sharing options...
papillon Posted September 12, 2017 Report Share Posted September 12, 2017 I do IV's weekly. It turns me from a couch potato into Wonder Woman. Still trying to tweak my meds. If my symptoms refuse to be managed, I will ask for 2x/week with a line placed so I can do it at home. It has been life-giving to me. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted September 12, 2017 Report Share Posted September 12, 2017 My cardiologist just started using iv saline as a treatment for POTS. I get them through the hospital he's affiliated with right now. Hoping later on to be able to do them closer or at home. So far I have responded well, the day of and day after are when I see the most benefit. It seems to help more with my blood pressure than heart rate. I do have a pacemaker which corrects my bradycardia and does what it can to compensate for BP drops as well as tachycardia. These 2 treatments together have made a big difference in my quality of life. Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted September 14, 2017 Report Share Posted September 14, 2017 I've been doing occasional iv saline treatment at a "wellness clinic" near my school. I find they help a lot with getting my heart rate slightly lower and increasing my energy. I wish I were able to get them more often, but I'm self-pay and it gets kind of pricey... Quote Link to comment Share on other sites More sharing options...
Chaos Posted September 14, 2017 Report Share Posted September 14, 2017 Hi! Sorry you are having to go thru all this. I used to have IV saline infusions 3x/week. I found them to be helpful in restoring my energy and helping keep HR down (although ironically they also lower my BP). Unfortunately for me the effects last about 24-36 hours so it eventually didn't seem to be worth the time and money involved to keep doing it. I was also worried about my veins being poked so many times but my doc didn't want to risk an infection with a port because of my immune deficiency. I found them to be most helpful when they could be infused slowly (1 l over 3 hours) and the saline warmed before being infused. It was less likely to trigger other problems. Hope you find something that helps! Quote Link to comment Share on other sites More sharing options...
yogini Posted September 17, 2017 Report Share Posted September 17, 2017 What is your blood pressure resting and standing? Quote Link to comment Share on other sites More sharing options...
Leah Wolfe Posted October 14, 2017 Report Share Posted October 14, 2017 Hi all I'm new to my diagnosis but have suffered for years with POTS symptoms. I tried increasing fluids and salt, and had a severe allergic reaction to Florinef. Tried 1L Saline IVs 3 times a week, then daily. Daily is definitely the right amount for me right now so I am trying to get a PICC line so I can do Saline IVs at home. Quote Link to comment Share on other sites More sharing options...
Lz27 Posted February 27, 2018 Report Share Posted February 27, 2018 I do daily IV through my PICC line, 1 L saline with vitamins over 8 hours. I have a nurse that comes once a week to clean and change the dressing, and I hook up the saline every evening before bed myself. It's a miracle for me! Since starting treatment a few months ago, I almost feel "normal"! My heart rate and blood pressure are now sustained at an average rate, and my debilitating fatigue is gone! I usually just need to take a nap every day and am actually able to function normally the rest of the day! I went from being stuck in bed, to working full time and helping to maintain our house. I've heard that the longer the saline drip is, the better your results will be. So maybe those of you that aren't getting great results should try switching to a longer drip. I'm getting a port placed next week to continue treatment so that I have the option to swim and do other things without tubes hanging out of my arm 24/7. We're also going to see if we can cut back my IV to every other day with the same great results I've been getting. Quote Link to comment Share on other sites More sharing options...
Pots Ma Posted April 9, 2019 Report Share Posted April 9, 2019 @ Lz27 What vitamins do you get on your saline? Who orders that for you? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.