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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. :) 

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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

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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 :)

 

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 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. 

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  • 3 weeks later...

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.

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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.

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  • 3 months later...

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?? 

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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.

 

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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. 

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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!

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  • 4 weeks later...

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. 

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  • 4 months later...

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.

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  • 1 year later...

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