IVs as a treatment

[Bluebonnet08]

Does anyone get IVs as a treatment for their POTS?  If so, how much and how often?

Since I gave birth, I'm getting 500ML of lactated ringers 3 times a week.  It seems to be helping quite a bit.  I am still struggling with quite a bit of symptoms and severe fatigue, but I am much more functional than I was last postpartum without getting them.

[Bluebonnet08]

I was just reading your other post - it sounds like you could benefit from them to help stabilize your symptoms.  I live in a major city and there are two hydration clinics.  I can just walk in and get them whenever I want to.  I don't need a doctor's orders.

However, that being said, my autonomic specialist, cardiologist, OB, & primary care physician have all at various times written me a script for IVs.  With my cardiologist and autonomic specialist, I was able to get the IVs in their offices.  I am not sure where you live, but you could look for a hydration clinic if you are in or close to a major city.  Sometimes they are touted as "hangover" clinics, but the one I go to serves all kinds of people with all kinds of illnesses.  If you don't have one that is close, it is very important to get a script from a doctor or specialist.  They can sometimes do it in-office.  There is a plethora of research on POTS & IVs so they would be remiss if they did not write a script for you.  

[Guest KiminOrlando]

I can't get my doctors to write a script for IVs either. I'm just told to drink more fluids and they tell me that I am dehydrated. I guess it's all a judgement call.

[Potsie1990]

Yup, same here. I can’t get any one to give me an IV. I got two bags last Time I was in the ER when the doctor first suspected POTS, felt like a new woman the next day. Everyone is so worried about kidney function 😕

[Pistol]

I have IV fluids on my medication list. When I get bad I get 24 hours LR and all is well for 6-8 weeks. I was just in ER 2 days ago for chest pain and hypertension ( 159/103 to 140/100 ). They gave me 2 liters of LR bolus - no effect whatsoever. They admitted me for observation and started my usual LR at 125 ml/hr and - Boom! BP's 110 - 120/ 60's! Now I am much better. I live very rural and we have no hydration clinics. I used to have a standing order for 1-2 liters NSS as needed and would drive 1 hour to hospital and get it at the daysurgery unit. But in my case it showed that I need at least 16 hours of continuous fluids to see effects that last. --- @POTSGIRL123 - I used to receive Medicaid and my infusions were covered by insurance. It all depends how the doc words the reason for having them. Unfortunately there is the common misconception in the medical community thet if you can drink you don't need IV fluids. But I am a great example that that is not correct. I drink tons of Gatorade when I get a flare and it does nothing but add weight on my hips. And the minute they hook me up to the fluids at 125 ml/hr - everything improves. Even chest pain, nausea, diarrhea, palpitations etc - all the usual flare symptoms go away. There are several articles about how IV saline infusions are effective in treatment of POTS. Sorry - I do not know how to copy-and-paste but here are 2 studies that you could print and give to your doctor - one is called Saline Therapy: Hydration Found to Be a Powerful Tool in Treatment of Dysautonomia by Dr Roderick Santa Maria. And then there is an excellent article/ study about IV saline infusions for POTS by Dr Blair Grubb. --- Also - some urgent care centers give IV boluses.  @Bluebonnet08 - I would love to get IV 3 x week but due to me being homebound and living so far away it is not possible, So far my doc has refused a port for home infusions but I think he is getting weak on that point because I have so many hospitalizations for fluids - I might get a port soon and then I can get them at home and Good Bye flares and hospital!!!!

[MomtoGiuliana]

My dr ordered 2 bags of saline 3 days a week when I had my last severe relapse--that started in May of this year.   I had it done at infusion center at hospital and insurance covered it. This was not available to me in the past when I was very ill with POTS--unless I went to ER, which I did only a couple of times.  I feel I recovered quite quickly due to this.  I slowly weaned off and am no longer getting infusions now.  Fortunately for me, my local hospital is just down the street. 

There are half a dozen other POTS patients also getting saline at this same infusion center--which was great to see.  It's great to know that the medical world may be starting to understand POTS a bit better and working to improve our quality of life.  I wish this were this easily available to everyone.

[Guest ANCY]

I have been getting infusions for about a year now. Started at a clinic 1 liter twice a week and then after getting a port we switched to at home 1 liter, 3 days a week. The last month has been difficult because I had sepsis and they pulled the port, to be sure the infection didn't travel over to my pacemaker. So we have been doing peripheral ivs, a royal pain for everyone involved. Because of the antibiotics affect on my gut I was getting very little in through my feeding tube. Certainly not enough to stay hydrated... When I got to the point of passing out 10-15 times a day and couldn't think clearly we switched to 1 liter a day, running 24/7. I got my new port Wednesday and we are hoping soon I'll have enough improvement with my feeding tube to go back to 3 x a week. Ports are safer, but having it accessed 24/7 brings a higher risk. 

With having had sepsis 8 times, many line related, I can speak to the hesitation of Drs and doing regular fluids. I could have benefited from fluids a long time ago but obviously there's a HUGE risk with me having a line. However now that I've been at it for a year it is impossible to deny the benefit/need i have for them. Generally brings my syncope episodes down from 10 (normal before starting fluids) to 0-3 times, depending on the days activities. With the aid of the iv fluids I'm able to also work on exercises and try to reverse the deconditioning.

So it really is a trade off with me, and the risks are certainly not to be taken lightly.