When I initially came across the abstract of a study on treating postural orthostatic tachycardia syndrome (POTS) with IV saline, my immediate reaction was “That’s way too simple. That CAN’T work.”
It irritated me to imagine that there was a simple, affordable, relatively low risk, and reasonably accessible answer to the symptoms I’d been living with for years – that I was JUST NOW hearing about. But there it was in black and white – “Conclusion: Intermittent IV infusions of saline dramatically reduce symptoms and improve quality of life in patients suffering from POTS.”
I printed out the study and walked into my provider’s office. “I want to try this.” She pulled up the study on her laptop, nodding along as she read. “Yes this seems promising. It appears to be rather effective for people with the same symptoms as you. But I don’t think getting regular IVs is a good idea, there is infection risk involved and this is experimental.”
I’m a licensed midwife, I was fully aware of the small risk of infection anytime a vein is accessed. But we were talking about a massive quality of life difference, and I was more than capable of safe guarding myself to reduce infection risk. Experimental? It’s saline! I didn’t care how experimental it was, receiving what is basically salty water in my veins periodically to potentially massively affect my symptoms seemed obviously worth a try. The risk was tiny, the prospect of an improvement to my quality of life seemed clearly justifiable.
So I walked into another doctor’s office, at our local American hospital. “Hey, I’m going to try this. Write me a prescription.” This time my status as an American licensed healthcare professional was enough to pull strings in the small Albanian private hospital. As I walked out with a prescription to try IV saline infusions I was painfully aware of my privilege in being able to obtain the document in my hands, but also incredibly excited to give it a try. I walked straight down to the outpatient facility and handed them the sheet of paper. “I need 1L of sodium chloride 0.9% please.”
I sat down on a gurney and a nurse placed an IV. Two hours later I walked out, climbed the stairs to my apartment panting and dizzy as usual, and went to bed. I was completely wiped out by the amount of physical activity I’d done that day – walking into a hospital, standing for 15 minutes in line, walking home. My resting pulse that morning had been 128 – not unusual at all for me. I was exhausted.
The next morning I got up and took my daughter to school, then stopped by the grocery store for a few items. I stood in line, checked out, carried my groceries to my car without needing to sit down once. Odd. Probably a fluke. I went home and put my groceries away, cleaned my house, and took a shower. Typically any ONE of these tasks would leave me out of breath and exhausted, but here I was feeling completely normal. I went upstairs and grabbed my pulse oximeter. 92. Whoa.
I decided to keep up the experiment. Every 10 days or so I’d trek to my local hospital with my 6 year old and sit through another 1L infusion of normal saline. I kept waiting for the effects to wear off, but it wasn’t happening. Don’t get me wrong, this was no miracle drug – I still had less physical energy than most of my peers and I still experienced fatigue and dizziness on a regular basis, but it was a MASSIVE decrease in symptoms. I could function almost normally.
I was beginning to wonder if this was some kind of placebo effect, it seemed too good to be true that something so simple would improve my symptoms. But how could it be? Many of the POTS patients studied had tried dozens of medications and treatments to no avail, and who would think that saline would do the trick of all things?!
The Study
While IV saline has been used by some ME/CFS practitioners for years, there wasn’t much research on its use for POTS – until 2017. This is the study I ran across in early 2019 that prompted me to push for it.
Effects of intermittent intravenous saline infusions in patients with medication—refractory postural tachycardia syndrome. Mohammed Ruzieh1,2 & Aaron Baugh1 & Osama Dasa1 & Rachel L. Parker1 & Joseph T. Perrault1 & Anas Renno1 & Beverly L. Karabin1 & Blair Grubb1. J Interv Card Electrophysiol (2017) 48:255–260 DOI 10.1007/s10840-017-0225-y
The study consisted of mostly younger females with idiopathic POTS. A significant percentage (25%) also had Ehlers Danlos Syndrome (EDS) – like me. The test subjects were followed for 3-
12 months and were allowed to have infusions when requested, the average treatment being 1.1 and 2.1 L of saline every 10 days or so.
Over 90% of the participants experienced significant improvement in symptoms lasting an average of three days. The average OHO score dropped in half (from 6.6 to 3.1). Dizziness symptom scores dropped from 7.2 to 2.8, fatigue scores from 8.2 to 4.3, weakness from 6.3 to 3.4. The patients’ ability to stand for a long time and walk for a short or long time about doubled.
In my personal experience, the improvement would last around 5-7 days at which point I would slowly start to decline, and then around 12 hours after my next infusion I’d suddenly realize how dramatically I’d improved.
My overall health seemed somewhat improved as well – I had a noticeable increase in muscle tone and strength. This appears to be a reversal of the deconditioning many POTS patients experience as a result of the extreme fatigue and inability to stand for long periods that comes with the condition. Because I felt better for several days out of every week, I could resume a more normal activity level and that helped recondition my body and improve my overall health.
The study also demonstrated that IV saline helped POTS patients who had exhausted other options. Almost 70% had tried and failed to improve on beta blockers. Fifty percent had failed with midodrine, 44% with SSRI’s and SNRI’s, 42% with desmopressin and 30% with fludrocortisone. Each patient had attempted an average of almost 4 medications with no success.
How does it work?
The way it works is fairly simple – many POTS patients suffer from chronically low blood volume, and increasing blood volume with IV fluids improves symptoms and function. Over time the decrease in fatigue and dizziness increases activity levels, creating a positive feedback loop resulting in increased activity levels over time and decreasing symptoms of deconditioning.
This can be tricky to test through labs, since low blood volume in POTS patients is often missed. Providers test the ratio of red blood cells to plasma volume, but in POTS both the number of red blood cells and the plasma volume can be low (and thus the ratio appears normal on the CBC). The most accurate way to diagnose low blood volume (besides subjective symptoms) is done through a radioactive tracer (iodinated-RISA) given via IV and then subsequent blood draws to determine the remaining levels in the bloodstream over time to ascertain blood volume.
Why can’t you just drink water and eat salt?
I’ve had multiple care providers ask this question – not just laypeople – and it can get a little annoying. Trust me, I do both. Neither have an effect on my blood volume. Many people with POTs also have EDS and abnormal gut motility, meaning less water is absorbed into the body than normal as it processes through. In addition, if your blood volume is low, but the ratio between red blood cells and plasma is normal, you may not be able to absorb the fluids even if you are drinking plenty of water every day.
Intravenous fluids bypass the digestive tract to eliminate issues with gut motility, and the fluids go directly into the bloodstream to increase the plasma volume.
Ongoing Treatment
As a care provider, I have the enormous benefit of being able to receive these treatments at home now – especially since I’ve returned to living in the United States where a trip to the hospital for an IV infusion no longer costs $28! I’ve trained my partner in placing IVs and I have midwife friends capable of placing them, and I can receive them from the comfort of my bed (or car, or under a tree at a park during a Pride event!).
It’s absolutely worth it to me to maintain the treatments, and I’m lucky to have veins that are reasonably easy to access and a partner and colleagues able to place IVs for me. If you don’t have easy vein access, this treatment may potentially require a PICC line or port, which is significantly higher risk and is something you should discuss at length with your care provider.
Talk to your care provider to see if this treatment is right for you. And if they won’t talk with you about it or give it serious consideration – find a new care provider! You deserve care that considers your quality of life and gives you every chance at exploring options that will serve you well.
