Hydration Therapy

[Kay Lynn]

For anyone who has had success with hydration therapy (saline infusions), what kinds of positive effects could I possibly see? I've only had one treatment.

[Becia]

I'm on one liter every other day, and have been since about September. For me, I've seen an improvement in some of my BP readings, as the way I run my treatments (very slow, over 9-10 hours), my body is absorbing the sodium better, so it's not just flushing through my kidneys super fast. I've been able to eat more on the days I do treatments, as with my gastroparisis/gastropathy, sometimes taking in all the fluids we need orally, I cannot eat because I'm just too full. My friends say I'm much more alert for Some time after a treatment (used to see a big difference when I would have to go to ER for fluids, and that was ran over the course of 45 minutes). I'm staying hydrated bettere through my vomiting spells, which is nice. I had been told once that if I'm vomiting for more than three days, I need to be admitted, this has def kept me out if the hospital. During the summer, it's a big blessing to, because I have temperature regulation issues, and if I get too hot, it cools me down, as well as helps with the massive sweating and replacing of fluids and electrolytes. I also do better on the lactated ringers fluid, instead of straight saline...once hospitalized, I received 12 liters over the course of three days, with most of that being the Lr for the electrolytes...I went from not being able to even stand, to being able to take a few steps, as well as sit up longer. The same happens in that spect for me with the saline; on days I do my treatments, I'm upright a little bit longer, a bit more steady. Basically there's more fluid in my body to circulate and try to get to my brain, otherwise every drop I have goes to my feet and out I go too.

I know this type of treatment works for some, and not so much for others, but for me, it's been a big blessing in my life. I have a PICC line and run them at home. I'm dreading the day I don't do them anymore, as I have a doctor trying to get me in line for a pacemaker that will track my breathing, and then lower my heart rate to match it, and to qualify for that, I have to lose the PICC line. We have tried a different schedule and tried reducing it even, but it doesn't last long before I'm downed again, and the doctor is ordering emergency fluids.

It's a pain, but in the end, it's been a worthwhile treatment option for me. Sorry if this is rambling, I haven't slept in three days due to other symptoms, and about to start my fluids now to run overnight. Hoping this helps with my headache as well.

[SarahA33]

Hi Kay Lynn, Welcome to the forum! Below is article that relates to dysautonomia and IV fluids. I don't have a port or a picc like, but like Becia mentioned, I also find fluids really helpful. . It helps regulate my heart rate and I feel so much better. I know exactly when I need them. Sarah

http://santamariamedicine.com/2013/04/saline-therapy-hydration-found-to-be-a-powerful-tool-in-treatment-of-dysautonomia-pots/

[Sunshinegirl]

I don't have iv fluids and salt tends to just run through me. I have had a few rough patches recently. I decided to drink Pedialyte non stop for a few days and my HR did go down dramatically. I was having spells in the 230's and now the rate has gone down to the 160's at the highest and for one day I felt "normal". It is not cheap to buy the stuff in mass but IV treatments are likely more expensive. If this does not work, I may move to IV treatments if I can get a dr to sign off.

[Becia]

With my stomach, I cannot tolerate high amounts of sodium in it without major illness following. I get 9,000 mg of sodium in one liter of fluids, and with it going to my cells, rather than my stomach, which I think helps. Anything to bypass the ol' finicky gi system, I'm all for.

[pooter18]

i also do the iv therapy 1-2 times a week but i have to go to the doctors office i so wish i could do them at home ..i also dump my water and salt through my kidneys..i feel better after the treatment for about 2 days..i also cannot drink enough to keep the fluids in me i need so i drink more G2 and coconut water and V8 to off set the IV therapy..and keep my salt levels up..it is a never ending pr

ocess and each day is different i adjust as needed depending on my heart rate and b/p..with my insurance going to the doctor office and it being an infusion i pay no co-pay and nothing for the IV..thank goodness or the offfice co-pay alone would break me..good luck

[Becia]

I'm lucky my insurance covers it in home. They initially didn't want to, but when I appealed the decision, I had to show how many times I was hospitalized, and how I ended up in ICU nearly every time for at least a day, just for IV therapy. All the sudden, they were all over approval, it just about made my head spin.

On days I get my IVs, I get to eat solid foods more. On non treatment days,I spend so much time and ability trying to get my hydration in me, that solid food goes by the wayside. my friends joke I'm the queen of ensure, lol.

I also found my body does better running the IV slow. A liter in the ER at full speed can bounce me for a couple hours, usually enough to get me home halfway safe, but running a liter at a slow rate, my body absorbs and holds on to it better. I currently every other day, but there have been times I have been unable to start a treatment, and can't get a home health nurse out for help, so if I have to skip, I at least have a small buffer. When I keep my continuity, and don't have anything else flaring me and making it worse, I'm fairly tolerable. Just ***** having to run the IV for 8-10 hours a day. Sometimes I do them overnight, but lately the tubing I've been sent isn't long enough to stretch and not cause problems, and I have a better window of ability to safely start it during the day, so usually on IV days, I'm hooked up by 10:30-11 am, to last all afternoon. It's a pain not to be able to get out of th building without carting the pole around, but the timeline usually allows me to at least grab my mail before starting, and then I'm homebound anyways. Seriously thinking of retrofitting my wheelchair with a pole for transport, that way I could take it with me easier if I had to, like in emergency, etc. I've actually brought my own IV to the ER before (it was still running, but doc sent me for more), and to the doctors office. You do what you gotta do with it.

Is it sad that this has been one of the most helpful treatments I've done for my POtS? Meds don't seem to do a whole lot for me, and the side effects are worse sometimes, but this one helps, and sometimes I'm not sure even why, but I can tell it when I skip too far outside my schedule (like when I was in the nursing home, they had the hardest time getting on board with it, until I threatened to do it myself), just like I can tell when I miss a dose of midodrine sometimes.