Most doctors don't want to be the first ones to try a novel therapy - they are worried you will sue them if it goes wrong, they are worried the insurance companies will give them a hard time if they prescribe non-traditional treatments, and they are worried about getting in trouble with medical licensing boards for prescribing non-traditional treatments. So try to understand this from your doctors point of view. If they prescribe you something out of the ordinary and not "proven" to work, they could be putting their career at risk.
That's why you have to you make it your mission to show your doctor that the therapy you want, IV saline, has been used before to treat POTS and its close cousin Orthostatic Intolerance, with excellent and safe results. Prestigious researchers are currently studying the benefits of IV saline on POTS patients. But any of us POTSies who've had saline while in the ER, don't need to wait for those studies to be published - we know saline makes us feel better and greatly improves the quality of our life.
Here's a 10 Step Strategy you can use to encourage your doctor to let you try IV saline therapy. I'll explain the details below.
1) Make sure your doctor understands that most POTS patients have low blood volume.
2) Make sure your doctor understands which POTS symptoms are probably caused or worsened by low blood volume.
3) If your doctor doesn't think that you have low blood volume, have him order a Daxor blood volume test to be sure.
4) Make sure your doctor knows you have tried less invasive ways of increasing your blood volume first.
5) Remind your doctor that you have felt so much better after getting saline in the ER (assuming that's true) and that you cannot afford to go to the ER a few times a week just to feel better.
6) Make sure your doctor understands that many other POTS patients have benefited from IV saline.
7) Make sure your doctor understands that top POTS researchers are doing studies on saline therapy for POTS, because they think it works.
8) Make sure your doctor knows that YOU understand the risks of having a PICC line or a chest port or regular IV infusions, and that you are willing to take the risk to see if you can get your quality of life back.
9) If your doctor is still reluctant, ask him to take your pulse, blood pressure and VO2 max measurements before a saline infusion, and then after you've had a liter or two of saline through a regular IV needle in your arm, to see if your numbers have objectively improved. This may not work, but if it does, it's pretty much irrefutable evidence that saline will improve your tachycardia, BP and endurance, and thus your quality of life.
10) If all else fails, find a new doctor and repeat from Step 1.
Make sure your doctor understands that most POTS patients have low blood volume. It is important for your doctor to know that most POTS patients have low blood volume, which doctors call hypovolemia. Vanderbilt University, one of the leading POTS research centers in the world, found that POTS patients had an average of a 12% deficiency in their plasma volume, but as high as a 27% deficiency. Plasma is the clear yellow part of your blood that carries nutrients and it's made up of about 80% water. Additionally, the Vanderbilt study found that POTS patients had a 27% deficiency of red blood cell mass. Red blood cells are the cells that transport oxygen to the rest of your body from your lungs. With low plasma and low red blood cells, POTS patients were found to have an average deficit of about 460mL in total blood volume. I highly suggest printing out this Vanderbilt study and showing it to your doctor: Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome This research study also discusses some of the possible causes of low blood volume in POTS patients, all of which seem to revolve around the kidney and autonomic neuropathy.
Make sure your doctor understands which POTS symptoms are probably caused or worsened by low blood volume. Perhaps most interesting to POTS patients, the authors of the Vanderbilt study explain what happens to the body when blood volume is too low. The "reduction in effective circulating volume could trigger a cascade of perturbations associated with POTS. In the supine position, this hypovolemia may cause only modest or nonsignificant changes in heart rate and plasma norepinephrine. In the upright position, in the setting of gravitational blood pooling, the additional reduced volume could decrease the cardiac output and cause a reflex increase in sympathetic nerve activity. The result would be an increase in the upright plasma norepinephrine levels and an increase in standing heart rate, as seen in patients with POTS."
This is a fancy way of telling us POTSies what we already know from experience - when we are laying down, we feel kind of O.K. but when we stand up, all hell breaks loose. We get a rush of adrenaline, our heart rate skyrockets when we stand up and sometimes our BP drops. We get a flurry of symptoms that are caused by increased sympathetic nervous system activity and increased norepinephrine levels - like dizziness, shaking/tremulousness, and anxious feeling that isn't based on an emotional trigger, sweaty or flushed skin, dilated pupils, shortness of breath, etc., etc. All of this is releived quite a bit if we lay back down again.
So what does all of this mean? Well, it means that if you have low blood volume and you figure out a way to correct it, maybe many of your POTS symptoms will be minimized or they may even totally disappear. I'm not trying to give any of you false hope, because POTS is a chronic illness and it would be inaccurate to say you are going to wake up the day after a saline infusion and be cured, but if it makes you feel better, that's what matters.
If your doctor doesn't think you have low blood volume, because he's done a blood test and "everything looks normal," ask him to order a "Daxor blood volume test". The basic blood test doctors usually use to check for low blood volume do not work on POTS patients, because those tests only look at the ratio of plasma to red blood cells. As explained in the Vanderbilt study, the plasma to red blood cell mass ratio in POTS patients is normal because we are missing equal parts plasma and red blood cells (we are missing almost a third of our plasma and a third of our red blood cells). The Daxor test is what they used in the Vanderbilt study. It precisely measures the plasma volume, the red blood cell volume and the total blood volume. The patient is given a very small injection of a radioactive isotope, Iodine-131 and the Daxor machine is used to analyze blood drawn at various intervals of time after the injection is given. Most doctors offices will not have a Daxor machine. You probably need to go to a large research hospital to get this test done. The Daxor Corporation has an online list of medical centers that have purchased a Daxor blood volume measurement machine from them.
Make sure your doctor knows you have tried less invasive ways of increasing your blood volume first. Once your doctor understands that you have low blood volume, then he should be more willing to help you try to increase it. Of course, the first lines of defense against low blood volume is increasing your salt and water intake and elevating the head of your bed. The second line of defense is taking Flourinef, which helps you retain the water and salt you consume. You should also make sure your vitamin levels are good, including your iron levels. Iron deficiency anemia is very common in menstruating women, which also happens to be the same group of people most likely to have POTS. If you are doing all of that, and it hasn't worked, or it's helping a little bit, but not enough, then it's time to talk to your doctor about trying IV saline therapy.
Remind your doctor that you have felt so much better after getting saline in the ER (assuming that's true) and that you cannot afford to go to the ER a few times a week just to feel better.
So many of us POTSies have been to the ER for various symptoms, maybe even before we were properly diagnosed with POTS, and it is very common for ER doctors to give us IV saline.
After 9 months of not getting an accurate diagnosis, I realized that every time I went to the ER and they gave me IV saline, I would feel amazing. I literally was brought in by ambulance on a stretcher, unable to lift my head of a pillow, and after 2 or 3 liters of saline, I walked out of the ER feeling like a new woman.
But visits to the ER just for saline are expensive and time consuming for the patient and a waste of hospital resources too. And I doubt my insurance company was too happy about having to pay all those ER bills either.
If something makes you feel better, you should try to find the easiest, most affordable, most efficient way to do it. Home IV saline therapy is definitely more convenient than running to the ER a few times a week, or even a few times per month.
Make sure your doctor knows that many other POTS patients have benefited from IV saline therapy. Besides me, I have found many other POTSies on the message boards and in chat rooms who have benefited from IV saline. Some POTS patients just get IV saline once or twice a month, when their symptoms are really bad. Other POTS patients, including me, have found that daily IV saline has really helped them. I would be happy to speak with any doctor who wants to know about my saline therapy and how it has improved my POTS symptoms (objectively, measured by my doctor) and how much it has improved my quality of life (subjectively, measure by me). There are also references listed below which confirm this.
I don't know of any statistics on how many POTSies are on saline therapy, and that's not surprising since the researchers barely know how many POTS patients exist. Just because there is no hard data doesn't mean there aren't people out there doing it. You just have to look for them.
Make sure your doctor understands that top POTS researchers are doing studies on saline therapy for POTS, because they think it works. There are ongoing research studies involving the treatment of POTS with IV saline, as well as past research studies that involved the use of IV saline in POTS patients. None of the previously published studies says point blank "you should give your POTS patients 1 liter of IV saline everyday," but this should be enough material to give your doctor comfort in knowing he is not the first one to try IV saline for a POTS patient. Your doctor can start IV saline therapy with you knowing that he will monitor you closely, and if there is no benefit seen in a few weeks, he may discontinue your therapy. If there is a benefit seen, he should consider documenting and sharing it with other doctors so that information can be used for future POTS patients.
Here are the ongoing research studies:
1) Dr. Julian Stewart from the Center for Hypotension in Valhalla, New York (one of the top pediatric POTS experts) is recruiting patients for a new research study, and the recruitment ad says "[w]e believe that IV fluids and ORS [oral rehydration solution] can increase the blood volume to a similar extent and may reduce symptoms associated with OI and POTS." http://www.stars-us.org/news/news.html
2) Vanderbilt University, one of the best POTS research centers in the world, is currently recruiting POTS patients for a research trial on exercise tolerance after IV saline.
Here are some studies related to IV saline and POTS that have already been published:
Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience This Mayo Clinic study says, among other things, "[w]e concluded from the results that midodrine and intravenous saline, when given in the short term, are effective in decreasing symptoms on tilt in patients with POTS."
As a side note, my own experience confirms this. I had two tilt tests done, about 11 months apart, both times I was not on saline and I passed out almost instantly upon being tilted upright. My heart rate skyrocketed and my BP dropped significantly as well. During the first test, I was not on any drugs. During the second test, I had been on increased oral fluids, salt pills and Flourinef, but that wasn't enough to prevent me from passing out. I had a third tilt test after I was on the IV saline (1.8 liters per day) for about one month, still taking the same Flourinef dose. I was tilted upright for 45 minutes and I did not pass out - not even close! My BP dropped and my heart rate increased, but not that much. I attribute the improvement in the BP and heart rate to the saline.
Instead of just getting this benefit when you have a tilt test, why not get it everyday?
2) The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management IV saline for POTS is discussed under the "Non-Pharmacological Treatment of POTS" section of this article, to wit, "[a]cute blood volume expansion is effective at controlling the heart rate and acutely improving symptoms. Jacob et al. found that 1 liter of physiological saline infused intravenously over 1 hour decreased the orthostatic tachycardia from 33±5 bpm before the infusion to 15±3 bpm immediately following the infusion. The physiological saline was more effective at heart rate control than were treatments with either an alpha-1 agonist or an alpha-2 agonist. This treatment is not practical on a day to day basis as a medical setting is required to insert the intravenous catheter and infuse the saline. Recently, there have been reports of patients having regular saline infusions, typically 1 liter of normal saline every other day or every day. Many report an improvement in symptoms. However, there are not yet objective data to substantiate such benefit. Further, there is a risk of vascular access complications or infection. At this time, such therapy for patients with POTS should be considered cautiously."
3) Effects of Volume Loading and Pressor Agents in Idiopathic Orthostatic Tachycardia
Circulation. 1997; 96; 575-580
This is another Vanderbilt study, which compared the effect of IV saline, Clonodine, Midorine and a placebo on orthostatic heart rate changes and blood pressure changes on patients with Idiopathic Orthostatic Tachycardia (one of the older names for POTS). The study found, "[s]aline infusion was most effective in blunting the orthostatic tachycardia in these patients (HR increase 32±5 before infusion and 14±2 bpm after infusion). Saline infusion also caused an orthostatic increase in SBP (-5±3 before infusion and 6±2 mm Hg after infusion,
studies demonstrated that expansion of the intravascular volume by infusion of 1 L normal saline was an extremely effective (though very transient) means of improving the orthostatic tachycardia and orthostatic tolerance of our patient population. The likely mechanism is through the loading of baroreceptors, which would result in a reflexive lowering of sympathetic tone." However, before you give this paper to your doctor, please note that it also says, without any analysis, that "administration of normal saline intravenously is impractical over the long term." But keep in mind that this study was done by Vanderbilt in 1997 and now, in 2011, Vanderbilt is doing new studies on IV saline, so maybe they've realized that the benefits of saline therapy outweigh the practical difficulties.
4) Oral Fluid Therapy, A Promising Treatment for Vasodepressor Syncope
Arch Pediatr Adolesc Med.;1998;152:165-168.
This article is about using IV saline before a tilt test to predict whether oral fluid therapy would be a useful treatment for patients suffering from Vasodepressor Syncope (sometimes called vasovagal syncope, or as I like to call it, "POTS-lite"). It doesn't really offer than much insight into IV saline therapy, other than noting that fewer syncopal episodes occurred during tilt table test after patients had received IV saline, because the saline increased their intravascular volume. And of course, this article is further evidence that all of us POTSies should try increasing our fluid and salt intake before looking into IV saline therapy.
5) Raised Cerebrovascular Resistance in Idiopathic Orthostatic Intolerance
This is another Vanderbilt study and the primary findings are, "in patients with IOI [idiopathic orthostatic intolerance-one of the older names for POTS], HUT [heads up tilt] causes a substantial decrease in cerebrovascular blood flow velocity. The decrease in blood flow velocity with HUT can be attenuated with interventions that improve systemic hemodynamics and therefore decrease reflex sympathetic activation." In this study, the infused patients with saline (as the placebo) and two other drugs. While the study is fairly complex, if you read it carefully you will notice that the saline performed almost as well as both of the drugs during the tilt test, without the bad side effects that one of the drugs caused. Since the study was really trying to determine the cause of cerebral hypoperfusion, they don't talk about saline as a treatment or any other treatment, other than saying "the decrease in cerebral blood flow velocity can be attenuated with interventions that improve systemic hemodynamics." As you can see from the results of the placebo in the study, those "interventions" include IV saline infusions. Another finding of interest in this study, "[i]t is probable that in these patients, this sympathetic activation is reflexively mediated to compensate for excessive venous pooling with standing, compounded by hypovolemia."
Other Sources of Information Regarding IV Saline Therapy:
1) The Handbook of Clinic Neurology, Volume 74 - The Autonomic Nervous System, Part I
Here's a medical text book on the Autonomic Nervous System written by doctors saying that POTS and NCS patients can benefit from IV saline infusions (see the bottom left side of page 174).
2) Postural Tachycardia Syndrome (POTS): Clinical FeaturesThis is from Medscape, an online reference site for doctors, which says, "[o]rthostatic intolerance with low BP requiring repeat visits to the emergency room for intravenous saline infusions is uncommon but by no means rare."
3) CFIDS, a non-profit chronic fatigue group, states on it's website website that IV saline helps orthostatic intolerance.
4) Here is a quote from a doctor on a natural medicine website I thought was interesting. I believe it is a book excerpt:
"He has given intravenous saline to patients with postural orthostatic tachycardia syndrome (POTS) and reports that they feel substantially better after the volume load. This probably happens because the saline counteracts an overall reduction in blood volume in patients; essentially, they feel better because their veins and arteries are carrying the amount of fluid they were designed to carry (I will discuss this and other research on POTS in the next chapter). But Dr. Bell shares my view that saline alone might do as much as saline loaded with vitamins and minerals." - Benjamin H. Natelson, M.D.
Those are the saline related references I have found so far. If you know of any, or if you personally have had success with saline therapy, please let me know by posting a comment to my blog.
Make sure your doctor knows that YOU understand the risks of having a PICC line or a chest port or regular IV infusions, and that you are willing to take the risk to see if you can get your quality of life back. While millions of people have had PICC lines and chest ports over the years, there are serious risks involved with them. You should become familiar with those risks before talking to your doctor about getting IV saline therapy, and then you should discuss those risks with your doctor too. You and your doctor will have to weigh those risks against the possible benefit of IV saline therapy for you - and because there isn't tons of empiric data, you won't really know the benefit to you until you've tried it. I guess you can note the benefit if you've had IV saline through a regular IV needle in your arm, like you often get in the ER. If that made you feel awesome, then imagine how you'll feel having that everyday or several times a week. If that didn't make a difference for you, then daily IV saline might not be worth the risks of having a PICC line or a chest port.
In deciding whether to go with a chest port or a PICC line, keep in mind that PICC lines are meant to be more temporary (a few months to a year at most), while chest ports can last a year or more (some people have them for years) depending on how often you stick a needle into it. In order to preserve my chest port for as long as possible and to protect the skin that sits above the port from being damaged too much, I get my needle put in by a nurse once a week. That is better than being stabbed 7 days a week with a needle and it will minimize wear and tear on the chest port itself, which can only be stabbed with a needle a finite number of times before you need a new one. Putting in a new one means another surgical procedure, so that's why it's important to me to try to make it last.
Another benefit of having a PICC or chest port is that you no longer have to get stabbed with needles all the time for blood tests. You can simply have the blood drawn out of the PICC or port tube, without any needles involved. However, not all labs and nurses are qualified to draw from a PICC or a port, so you may have to go to make special arrangements for that. My home care nurses, who come once a week to change my bandage, are qualified to draw blood from PICCs and chest ports, so I have my blood drawn by them rather than going to the lab like I used to. The nurses at my hematologist's office are also qualified to draw blood from PICCs and ports, because they deal with blood tests and infusions on patients with ports and PICCs all the time.
If your doctor is still reluctant to let your try saline therapy as part of your overall POTS treatment, ask them if they will let you have one or two liters of saline on just one day though a regular IV needle, and ask them if they will check your heart rate and blood pressure when you are standing up for 5 to 10 minutes, before and an hour after the saline. If possible, ask if they can also check your V02 max (a way of measuring your oxygen consumption levels that helps measure your endurance or your overall cardiovascular fitness). This usually requires a treadmill and a machine that measures your breath.
The point of this little science experiment is to show your doctor measurable results of improved heart rate and blood pressure when you are standing, after a saline infusion. This is similar to the tilt tests in all of those research studies in which patients fainted less often and had improved heart rate and blood pressure during tilt testing after they received saline.
Before you do this, ask your doctor if the results are favorable, would he change his mind and allow you to have a trial of home saline therapy? If he still says no, then don't bother with the experiment. Find a new doctor who is more open minded and more willing to help you find treatments that improve your quality of life.
If you've gone through all of this, and your doctor still says no, I would ask the doctor to give you a clear explanation as to why he thinks saline therapy is not appropriate for you. Is he just concerned about the risks of having a PICC or chest port? Do you have some sort of other medical condition that could be worsened by saline therapy (kidney failure, high blood pressure, an allergy to something in the saline, a high risk of infections from an underlying medical condition, etc.). Maybe he suspects your problem isn't low blood volume, and if so, you should ask him to explain why he thinks that.
When all else fails, if you truly believe that your POTS symptoms are being caused by or worsened by low blood volume, and if you've tried increasing your fluids and salt and you've tried Flourinef and probably a hundred other things, and you know you feel great when you get saline in the ER, then you may want to consider getting a second opinion or finding a new doctor.
It's very hard for us POTSies to find a doctor who know what POTS is, and even harder to find one willing to work with us to devise a treatment plan. But you can never give up. Just keep pushing until you get what you need to feel better. You will get there someday!
As a final thought, I have been told by my doctors that I can't have saline therapy forever. I understand that, but I'm hoping the saline will give my body the jumpstart it needs to get me out of bed (it has!) and more active (it has!). I am in the process of signing up for Dr. Benjamin Levine's famed POTS exercise protocol, and I think the saline will help me be better able to tolerate the intense exercise regimen that awaits me. Believe me, no one wants this chest port out of my body more than I do! I look forward to the day when I can get it taken out and walk about without a needle hanging off my chest. I also look forward to a day without POTS, or at least a day without any really bad symptoms.