This article has been prepared to provide information on the use of IV Saline as a treatment tool for patients diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS).
POTS and Hypovolemia
Many POTS patients have low blood volume, otherwise known as 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. Additionally, the Vanderbilt study found that POTS patients had a 27% deficiency of red blood cell mass. With low plasma and low red blood cell volume, POTS patients were found to have an average deficit of about 460 mL in total blood volume. See, Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome, Circulation, 2005; 111:1574-1582. This Vanderbilt study also discusses some of the possible causes of low blood volume in POTS patients, which seems to revolve around the kidney and autonomic neuropathy.
POTS Symptoms Likely Caused or Worsened by Hypovolemia
Testing for Hypovolemia in the POTS Patient
Many practitioners rely on a standard a CBC to check for anemia and/or blood volume related problems. A CBC would be useful in revealing hypovolemia if it is connected to a discrepancy between the ratio of plasma volume and RBC volume. However, a CBC is usually not useful in revealing hypovolemia in POTS patients because, as explained in the Vanderbilt study referenced above, the hypovolemia in POTS patients often results in a proportional or nearly proportional decrease in plasma volume and RBC volume. Therefore, a CBC, which looks at the ratio between plasma and RBCs, would not normally reveal hypovolemia that may be occuring in a POTS patient.
Currently, the most accurate way to measure blood volume in a POTS patient would be to order a blood volume study using a I-131 tracer and a BVA-100 blood volume analyzer machine made by the Daxor Corporation. This test is regularly used to evaluate POTS patients for hypovolemia at Vanderbilt University's Autonomic Dysfunction Center and at Cleveland Clinic, which has a large POTS specialty group. This test is now available at many larger research hospitals throughout the country. A list of facilities that have this test available and other information can be found on the Daxor Corporation's website: http://daxor.com/clientlist.asp
First Line of Defense For Hypovolemia in POTS
For many POTS patients, particularly those suffering from bouts of hypotension, the first line of defense for hypovolemia is increasing salt intake up to 8-10 g per day and increasing fluid intake to 2-3 L per day. For some patients however, this does not adequately relieve symptoms of hypovolemia. Furthermore, some patients may be unable to increase salt and fluid intake to these levels due to gastrointestional disturbances, likely caused by autonomic dysfunction impacting the GI tract. Additionally, consumption of such large quantities of salt is likely to irritate the stomach, and could even worsen gastrointestinal symptoms. Many patient experience diarrhea as a result of such an increase in salt consumption, and this can exacerbate any pre-existing hypovolemia and hypotension.
Some practitioners prescribe 1000 mg Sodium Chloride tablets, several times per day, but many POTS patients cannot tolerate these pills. This is possibly due to the fact that so many POTS patients already have gastrointestinal upset. Furthermore, consuming large salt quantities at once can induce nausea and cramping, making patients less likely to stick with a regimen of salt pills. Some patients resort to drinking pickle juice, as well as adding large quantities of sea salt, soy sauce and/or chicken broth to all of the foods they eat. This makes eating a less than enjoyable experience for most, and it can be very difficult for the average patient to keep track of how much salt they have consumed in one day if they are just dousing their foods with salt. Some patients use Thermotabs brand supplements, which also contain potassium and other electrolytes. However, in order to achieve the high sodium levels desirable for the treatment of hypotension and/or hypovolemia, patients would have to take 10-20 Thermotabs per day, and that can be quite expensive. Even with these options available, some POTS patients are not able to consume enough salt and fluids per day to see a substantial improvement in their symptoms.
Patient Comfort and Quality of Life After IV Saline
Many POTS patients, including the author of this article, have reported a substantial improvement in the quality of their life and a lessening of their POTS symptoms after receiving IV saline. Patients share stories of being brought into the ER by ambulance, unable to walk and extremely lightheaded, and after receiving 1-2 liters of normal saline, being able to walk out of the ER feeling pretty good and drive themselves to the store to run some errands. While this is a very subjective description, many patients share similar stories.
A bit of my own experience with POTS and saline therapy - I was a 30 year old althetic and physically fit attorney on a ski vacation with friends in January 2010 when literally woke up sick one morning. Just two days earlier, I had spent two hours cross-country skiing up a mountain, so my cardiovascular system was in top form. I didn't know it at the time, but my myraid of acute onsent inexplainable symptoms, which seemed to impact every system in my body, was the start of a long battle with POTS. For the first nine months, I was unable to walk or stand or even sit up for more than a few seconds without collapsing from either a full syncopal episode or a pre-syncopal episode. I bounced from specialist to specialist trying to figure out what was causing this. Thankfully, after nine months I was diagnosed by one of NYC's top hospitals with POTS and started on Flourinef, 8000 mg of salt per day and 2-3 L of fluids per day. Within a week or so, I was able to sit up for an hour or two, which was a major improvement over being stuck laying on my back for nine months. Under doctor's supervision and with a PT, I started doing reclined workouts. I removed gluten from my diet, which did wonders for my GI symptoms even though I do not have Celiac Disease. I did everything my doctors asked me to do, and worked really hard to get back to my pre-POTS life. However, after months and months of doing everything I was supposed to, I was still unable to walk more than 50 ft without getting pre-syncopal lightheadedness, losing my vision to a field of grey, tachycardia over 145 and extreme shortness of breath. Eventually, I was admitted to the hospital for about a week for further testing and observation, and my doctor gave me IV saline thinking I was just dehydrated (which I was not, because I had been drinking my 2-3L of water per day as instructed). Several hours after completing my first liter of saline drip, I was up walking to the bathroom, chatting up my nurses and doing exercises in my hospital bed like Jane Fonda. When my doctor saw the benefit the IV fluids gave me, and she read up on POTS and hypovolemia and the use of IV saline to treat POTS, she gave me a PICC line to go home from the hospital with. We never expected how much this saline would change my life for the better.
I received 1 liter of D5 Normal Saline (5% dextrose, .9% NaCal) every night for 11 months. The saline was just the boost my body needed to start my recovery. Objectively, my doctor was able to document that I experienced less severe tachycardia and improved blood pressure while on the saline, and subjectively I can report that I had less lightheadedness, vertigo, dizziness, shakiness, palpitations and those other uncomfortable sensations caused by surges of epinephrine when POTS patients stand up. After the saline, I was able to begin strenuous cardiovascular exercises on my rowing machine/recumbent bike. I was able to walk more and stand up long enough to do the dishes and laundry and other household chores. On good days with the saline, I was able to make short trips to the foodstore and pharmacy (with someone else driving). On really good days, I was outside gardening and I even took a few trips to the beach. I was a much happier person, because I was experiencing fewer and less severe physical symptoms and I was able to enjoy more normal activities. I was unable to do any of this before the saline. Saline was my saving grace during my POTS ordeal. I am thankful that it was made available to me as an option to try.
IV saline therapy was a bridge to help carry me over the rough waters of POTS while my doctors were trying to determine the cause of my autonomic neuropathy. Once they identified the cause of my autonomic neuropathy and POTS as Sjogren's Syndrome, I began IVIG treatments and was able to go off the IV saline after my first months of IVIG infusions.
Growing Popularity of IV Saline as a Treatment Tool for POTS
While I have not found any peer reviewed articles identifying precisely how many POTS patients are receiving IV saline as part of their overall POTS therapy at this time, it is clear that more and more POTS patients are benefitting from IV saline therapy. While anecdotal, POTS message boards, forums and support group websites are filled with stories from all over the US, Australia and England, from patients who are sharing their experiences with IV saline and encouraging other patients to try it.
It is not surprising that are no numbers on how many POTS patients are on IV saline therapy, since researchers barely know how many POTS patients exist. One indicator that the value of IV saline as a treatment tool is being noted, is that major POTS research centers are doing research involving the use of IV saline in POTS patients.
Current Research Related to the use of IV Saline in POTS Patients
While not purporting to be a comprehensive list, here are the research studies I found involving POTS and IV saline I found after a few minutes on Google and Pub Med. I suspect a more detailed journal search would turn up additional research.
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
8) The Handbook of Clinic Neurology, Volume 74 - The Autonomic Nervous System, Part I
This is 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).
Making Sure the Patient Understands the Risks and Choosing The Ideal Delivery Method
IV saline therapy can be delivered via traditional intravenous catheter, PICC line, Mid-Line or a Chest Port. The practitioner should evaluate the needs of the patient and weigh the risks and benefits to determine which course is best. The practitioner should discuss the risks of the recommended delivery, versus. other avenues of saline delivery with the patient.
Considerations include the accessibility and viability of the patients veins. Nurses often have a difficult time finding a suitable vein for IV access in patients experiencing hypotension and/or hypovolemia. This can result in the patient experiencing numerous needle sticks and vein irritation. Furthermore, many POTS patients have already been subjected to dozens, if not hundreds of blood draws in an effort to find the cause of their diverse symptoms. In some cases, the patients peripheral veins may be in such poor condition that traditional IV catheters become a problem to insert and maintain for the duration of the infusion.
Additionally, the practitioner should consider the likely number of times per week or month that the patient will required IV saline. If the patient is going to only need it once a month, then a transient IV access would probably be more appropriate. For example, some female POTS patients use IV saline as a supplemental therapy during the time within the menstrual cycle in which their symptoms are aggravated. If a patient will be utilizing IV saline several times a month, weekly, or daily, a more permanent IV access may be appropriate.
While PICC lines are less invasive to insert than a chest port, the inability to swim with a PICC line, to bathe normally and also the annoyance of a tube sticking out of ones arm can be a major drawback for some POTS patients. Swimming is considered one of the ideal exercises to help rehabilitate POTS patients, because the pressure of the water serves to prevent venous pooling and orthostatic intolerance. PICC lines also carry a higher risk of infection than chest ports.
Chest ports can be inserted through a fairly simple surgical procedure, and have been used safely for many years in patients with other chronic illnesses requiring regular intravenous delivery of medication and in chemotherapy patients. Chest ports can be accessed daily, weekly, monthly, or as little or as often as needed. When the port is not in use and a needle is not inserted into the port, the patient can bathe and swim normally. As mentioned above, swimming is a valuable rehabilitation exercise for POTS patients. A chest port can be inserted so that it is barely visible to anyone but the patient, which is something worth consideration, particularly because so many POTS patients are young women who may be sensitive to looking different that their peers. Furthermore, a chest port can be flushed with heparin and not used for long periods of time, so that when the patient is feeling better and perhaps doesn't need the saline as often, they will not be burdened with a PICC line sticking out of their arm.
Of course, the appropriate choice of access for IV saline therapy can change over time. If a patient has never tried IV saline for their POTS before, it would probably be appropriate to give traditional catheter IV insertion a try for the first few weeks, until it can be determined how often the patient will need the saline.
Logistically speaking, insurers have covered IV saline for the treatment of hypotension and/or hypovolemia in POTS patients. In my own experience, and I have Blue Cross Blue Shield, the insurance company paid for my PICC, and then later chest port insertion, without any problems. They provide me with one home care nurse visit per week. The nurse changed my chest port needle and dressing weekly, and also checked my vitals and reported back to my doctor if there was a problem.
I received 1 liter of saline per night using a small battery operated pump. I did the infusion while sleeping so it did not interfere with my daily activities, since the whole point of this was to help me reclaim as much of my "normal" life as possible. If I had to visit an outpatient IV infusion center or the ER several times a week to get the IV saline, my quality of life would have been terrible. Instead, I felt so much better with the saline that I was able to engage in normal activities like shopping and gardening and socializing with family and friends. My nurse taught me how to change the dressing, in the event that it became torn or wet during the week. I removed the needle and dressing 24 hours before the nurse comes to insert a new needle, providing me with one day per week for my swimming rehabilitation exercises. I know of other POTS patients who have been taught to access their chest ports by themselves, so they can give themselves IV saline 2 or 3 times per week, and they take the needle out each time, so they are free to swim several days per week.
Objectively Confirming The Benefits of IV Saline
If your patient is asking you to let them try IV saline therapy for their POTS symptoms, and you are reluctant, consider doing a simple test in your office. Check the patients BP and pulse after 10 minutes of supine resting and after 10 minutes standing upright (assuming the patient can even tolerate standing upright for 10 minutes). Then allow the patient to have a 1-2 liter infusion of saline through a traditional IV catheter. A few hours after the completion of the saline infusion, recheck the patients supine and upright BP and pulse. You will likely see an objective improvement in the patients BP and a reduction in the severity of upright tachycardia. Subjectively, ask the patient if they feel any better or any worse. This is not a standardized formal test, but it should give practitioners something to rely upon if questions are ever raised by the insurer as to the need or benefit for IV saline therapy.
POTS and Hypovolemia
Many POTS patients have low blood volume, otherwise known as 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. Additionally, the Vanderbilt study found that POTS patients had a 27% deficiency of red blood cell mass. With low plasma and low red blood cell volume, POTS patients were found to have an average deficit of about 460 mL in total blood volume. See, Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome, Circulation, 2005; 111:1574-1582. This Vanderbilt study also discusses some of the possible causes of low blood volume in POTS patients, which seems to revolve around the kidney and autonomic neuropathy.
POTS Symptoms Likely Caused or Worsened by Hypovolemia
The authors of the above referenced Vanderbilt study discuss 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 increased heart rate leads to patient discomfort and often a desire to return to the supine position immediately. The increased norepinephrine levels often places the POTS patient in "fight or flight" mode and this can appear to be an anxiety attack, but it is not an emotionally based anxiety attack if it is triggered by a flood of norepinephrine due to hypovolemia. This flood of norepinephrine and increase in sympathetic nervous system activity can cause or worsen symptoms such as shaking, tremulousness, palpitations, chest pains, profuse sweating, flushed skin, shortness of breath, vertigo, lightheadedness and decreased ability to concentrate.
Many practitioners rely on a standard a CBC to check for anemia and/or blood volume related problems. A CBC would be useful in revealing hypovolemia if it is connected to a discrepancy between the ratio of plasma volume and RBC volume. However, a CBC is usually not useful in revealing hypovolemia in POTS patients because, as explained in the Vanderbilt study referenced above, the hypovolemia in POTS patients often results in a proportional or nearly proportional decrease in plasma volume and RBC volume. Therefore, a CBC, which looks at the ratio between plasma and RBCs, would not normally reveal hypovolemia that may be occuring in a POTS patient.
Currently, the most accurate way to measure blood volume in a POTS patient would be to order a blood volume study using a I-131 tracer and a BVA-100 blood volume analyzer machine made by the Daxor Corporation. This test is regularly used to evaluate POTS patients for hypovolemia at Vanderbilt University's Autonomic Dysfunction Center and at Cleveland Clinic, which has a large POTS specialty group. This test is now available at many larger research hospitals throughout the country. A list of facilities that have this test available and other information can be found on the Daxor Corporation's website: http://daxor.com/clientlist.asp
First Line of Defense For Hypovolemia in POTS
For many POTS patients, particularly those suffering from bouts of hypotension, the first line of defense for hypovolemia is increasing salt intake up to 8-10 g per day and increasing fluid intake to 2-3 L per day. For some patients however, this does not adequately relieve symptoms of hypovolemia. Furthermore, some patients may be unable to increase salt and fluid intake to these levels due to gastrointestional disturbances, likely caused by autonomic dysfunction impacting the GI tract. Additionally, consumption of such large quantities of salt is likely to irritate the stomach, and could even worsen gastrointestinal symptoms. Many patient experience diarrhea as a result of such an increase in salt consumption, and this can exacerbate any pre-existing hypovolemia and hypotension.
Some practitioners prescribe 1000 mg Sodium Chloride tablets, several times per day, but many POTS patients cannot tolerate these pills. This is possibly due to the fact that so many POTS patients already have gastrointestinal upset. Furthermore, consuming large salt quantities at once can induce nausea and cramping, making patients less likely to stick with a regimen of salt pills. Some patients resort to drinking pickle juice, as well as adding large quantities of sea salt, soy sauce and/or chicken broth to all of the foods they eat. This makes eating a less than enjoyable experience for most, and it can be very difficult for the average patient to keep track of how much salt they have consumed in one day if they are just dousing their foods with salt. Some patients use Thermotabs brand supplements, which also contain potassium and other electrolytes. However, in order to achieve the high sodium levels desirable for the treatment of hypotension and/or hypovolemia, patients would have to take 10-20 Thermotabs per day, and that can be quite expensive. Even with these options available, some POTS patients are not able to consume enough salt and fluids per day to see a substantial improvement in their symptoms.
Patient Comfort and Quality of Life After IV Saline
Many POTS patients, including the author of this article, have reported a substantial improvement in the quality of their life and a lessening of their POTS symptoms after receiving IV saline. Patients share stories of being brought into the ER by ambulance, unable to walk and extremely lightheaded, and after receiving 1-2 liters of normal saline, being able to walk out of the ER feeling pretty good and drive themselves to the store to run some errands. While this is a very subjective description, many patients share similar stories.
A bit of my own experience with POTS and saline therapy - I was a 30 year old althetic and physically fit attorney on a ski vacation with friends in January 2010 when literally woke up sick one morning. Just two days earlier, I had spent two hours cross-country skiing up a mountain, so my cardiovascular system was in top form. I didn't know it at the time, but my myraid of acute onsent inexplainable symptoms, which seemed to impact every system in my body, was the start of a long battle with POTS. For the first nine months, I was unable to walk or stand or even sit up for more than a few seconds without collapsing from either a full syncopal episode or a pre-syncopal episode. I bounced from specialist to specialist trying to figure out what was causing this. Thankfully, after nine months I was diagnosed by one of NYC's top hospitals with POTS and started on Flourinef, 8000 mg of salt per day and 2-3 L of fluids per day. Within a week or so, I was able to sit up for an hour or two, which was a major improvement over being stuck laying on my back for nine months. Under doctor's supervision and with a PT, I started doing reclined workouts. I removed gluten from my diet, which did wonders for my GI symptoms even though I do not have Celiac Disease. I did everything my doctors asked me to do, and worked really hard to get back to my pre-POTS life. However, after months and months of doing everything I was supposed to, I was still unable to walk more than 50 ft without getting pre-syncopal lightheadedness, losing my vision to a field of grey, tachycardia over 145 and extreme shortness of breath. Eventually, I was admitted to the hospital for about a week for further testing and observation, and my doctor gave me IV saline thinking I was just dehydrated (which I was not, because I had been drinking my 2-3L of water per day as instructed). Several hours after completing my first liter of saline drip, I was up walking to the bathroom, chatting up my nurses and doing exercises in my hospital bed like Jane Fonda. When my doctor saw the benefit the IV fluids gave me, and she read up on POTS and hypovolemia and the use of IV saline to treat POTS, she gave me a PICC line to go home from the hospital with. We never expected how much this saline would change my life for the better.
I received 1 liter of D5 Normal Saline (5% dextrose, .9% NaCal) every night for 11 months. The saline was just the boost my body needed to start my recovery. Objectively, my doctor was able to document that I experienced less severe tachycardia and improved blood pressure while on the saline, and subjectively I can report that I had less lightheadedness, vertigo, dizziness, shakiness, palpitations and those other uncomfortable sensations caused by surges of epinephrine when POTS patients stand up. After the saline, I was able to begin strenuous cardiovascular exercises on my rowing machine/recumbent bike. I was able to walk more and stand up long enough to do the dishes and laundry and other household chores. On good days with the saline, I was able to make short trips to the foodstore and pharmacy (with someone else driving). On really good days, I was outside gardening and I even took a few trips to the beach. I was a much happier person, because I was experiencing fewer and less severe physical symptoms and I was able to enjoy more normal activities. I was unable to do any of this before the saline. Saline was my saving grace during my POTS ordeal. I am thankful that it was made available to me as an option to try.
IV saline therapy was a bridge to help carry me over the rough waters of POTS while my doctors were trying to determine the cause of my autonomic neuropathy. Once they identified the cause of my autonomic neuropathy and POTS as Sjogren's Syndrome, I began IVIG treatments and was able to go off the IV saline after my first months of IVIG infusions.
Growing Popularity of IV Saline as a Treatment Tool for POTS
While I have not found any peer reviewed articles identifying precisely how many POTS patients are receiving IV saline as part of their overall POTS therapy at this time, it is clear that more and more POTS patients are benefitting from IV saline therapy. While anecdotal, POTS message boards, forums and support group websites are filled with stories from all over the US, Australia and England, from patients who are sharing their experiences with IV saline and encouraging other patients to try it.
It is not surprising that are no numbers on how many POTS patients are on IV saline therapy, since researchers barely know how many POTS patients exist. One indicator that the value of IV saline as a treatment tool is being noted, is that major POTS research centers are doing research involving the use of IV saline in POTS patients.
Current Research Related to the use of IV Saline in POTS Patients
While not purporting to be a comprehensive list, here are the research studies I found involving POTS and IV saline I found after a few minutes on Google and Pub Med. I suspect a more detailed journal search would turn up additional research.
Here are a few of the ongoing research studies as of Summer 2011:
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:
Mayo Clinic Proceedings March 2007, Vol. 82 no. 3 308-313.
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 IV saline.
Indian Pacing Electrophysiol J. 2006 Apr-Jun; 6(2): 84–99.
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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."
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." Without further analysis, the article states, "administration of normal saline intravenously is impractical over the long term." That is an unsupported and overly broad statement. The many patients getting long term IV saline for POTS would indicate that, when circumstances warrant, the practical difficulties in arranging for regular IV saline therapy can be outweighed by the benefit provided to the patient.
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." Without further analysis, the article states, "administration of normal saline intravenously is impractical over the long term." That is an unsupported and overly broad statement. The many patients getting long term IV saline for POTS would indicate that, when circumstances warrant, the practical difficulties in arranging for regular IV saline therapy can be outweighed by the benefit provided to the patient.
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. It doesn't really offer detailed 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 intravascular volume. And of course, this article is further evidence that POTS patients should try increasing oral fluid and salt intake before attempting IV saline therapy.
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. It doesn't really offer detailed 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 intravascular volume. And of course, this article is further evidence that POTS patients should try increasing oral fluid and salt intake before attempting IV saline therapy.
Hypertension. 1998;32:699-704.
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, they infused patients with saline (as the placebo) and two other drugs. While the study is fairly complex, if you read it carefully you will note that the saline performed almost as well as both of the drugs during the tilt test, without the common side effects that one of the drugs caused. Since the study was really examing 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:
8) The Handbook of Clinic Neurology, Volume 74 - The Autonomic Nervous System, Part I
This is 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).
This 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."
10) CFIDS, a non-profit chronic fatigue advocacy group, states on it's website website that IV saline helps orthostatic intolerance.
11) Here is a quote from a doctor on a medical 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 found with a quick online search. If you know of any other references, or if you have had success with IV saline therapy in your own practice, please let me know by posting a comment to my blog.
Making Sure the Patient Understands the Risks and Choosing The Ideal Delivery Method
IV saline therapy can be delivered via traditional intravenous catheter, PICC line, Mid-Line or a Chest Port. The practitioner should evaluate the needs of the patient and weigh the risks and benefits to determine which course is best. The practitioner should discuss the risks of the recommended delivery, versus. other avenues of saline delivery with the patient.
Considerations include the accessibility and viability of the patients veins. Nurses often have a difficult time finding a suitable vein for IV access in patients experiencing hypotension and/or hypovolemia. This can result in the patient experiencing numerous needle sticks and vein irritation. Furthermore, many POTS patients have already been subjected to dozens, if not hundreds of blood draws in an effort to find the cause of their diverse symptoms. In some cases, the patients peripheral veins may be in such poor condition that traditional IV catheters become a problem to insert and maintain for the duration of the infusion.
Additionally, the practitioner should consider the likely number of times per week or month that the patient will required IV saline. If the patient is going to only need it once a month, then a transient IV access would probably be more appropriate. For example, some female POTS patients use IV saline as a supplemental therapy during the time within the menstrual cycle in which their symptoms are aggravated. If a patient will be utilizing IV saline several times a month, weekly, or daily, a more permanent IV access may be appropriate.
While PICC lines are less invasive to insert than a chest port, the inability to swim with a PICC line, to bathe normally and also the annoyance of a tube sticking out of ones arm can be a major drawback for some POTS patients. Swimming is considered one of the ideal exercises to help rehabilitate POTS patients, because the pressure of the water serves to prevent venous pooling and orthostatic intolerance. PICC lines also carry a higher risk of infection than chest ports.
Chest ports can be inserted through a fairly simple surgical procedure, and have been used safely for many years in patients with other chronic illnesses requiring regular intravenous delivery of medication and in chemotherapy patients. Chest ports can be accessed daily, weekly, monthly, or as little or as often as needed. When the port is not in use and a needle is not inserted into the port, the patient can bathe and swim normally. As mentioned above, swimming is a valuable rehabilitation exercise for POTS patients. A chest port can be inserted so that it is barely visible to anyone but the patient, which is something worth consideration, particularly because so many POTS patients are young women who may be sensitive to looking different that their peers. Furthermore, a chest port can be flushed with heparin and not used for long periods of time, so that when the patient is feeling better and perhaps doesn't need the saline as often, they will not be burdened with a PICC line sticking out of their arm.
Of course, the appropriate choice of access for IV saline therapy can change over time. If a patient has never tried IV saline for their POTS before, it would probably be appropriate to give traditional catheter IV insertion a try for the first few weeks, until it can be determined how often the patient will need the saline.
Logistically speaking, insurers have covered IV saline for the treatment of hypotension and/or hypovolemia in POTS patients. In my own experience, and I have Blue Cross Blue Shield, the insurance company paid for my PICC, and then later chest port insertion, without any problems. They provide me with one home care nurse visit per week. The nurse changed my chest port needle and dressing weekly, and also checked my vitals and reported back to my doctor if there was a problem.
I received 1 liter of saline per night using a small battery operated pump. I did the infusion while sleeping so it did not interfere with my daily activities, since the whole point of this was to help me reclaim as much of my "normal" life as possible. If I had to visit an outpatient IV infusion center or the ER several times a week to get the IV saline, my quality of life would have been terrible. Instead, I felt so much better with the saline that I was able to engage in normal activities like shopping and gardening and socializing with family and friends. My nurse taught me how to change the dressing, in the event that it became torn or wet during the week. I removed the needle and dressing 24 hours before the nurse comes to insert a new needle, providing me with one day per week for my swimming rehabilitation exercises. I know of other POTS patients who have been taught to access their chest ports by themselves, so they can give themselves IV saline 2 or 3 times per week, and they take the needle out each time, so they are free to swim several days per week.
Objectively Confirming The Benefits of IV Saline
If your patient is asking you to let them try IV saline therapy for their POTS symptoms, and you are reluctant, consider doing a simple test in your office. Check the patients BP and pulse after 10 minutes of supine resting and after 10 minutes standing upright (assuming the patient can even tolerate standing upright for 10 minutes). Then allow the patient to have a 1-2 liter infusion of saline through a traditional IV catheter. A few hours after the completion of the saline infusion, recheck the patients supine and upright BP and pulse. You will likely see an objective improvement in the patients BP and a reduction in the severity of upright tachycardia. Subjectively, ask the patient if they feel any better or any worse. This is not a standardized formal test, but it should give practitioners something to rely upon if questions are ever raised by the insurer as to the need or benefit for IV saline therapy.
Great information. Thank you. More and more patients with POTS are having IV fluids today, it's becoming a standard treatment worldwide.
ReplyDeleteIf you are interested, there are a few other posts on my blog about my own experience with IV saline. Overall, I love it and it has really changed my life for the better.
ReplyDeleteAlso, one more thing you can point out to your doctors is that some of the POTs journal articles list erythropoeitin as one of the drugs used to treat POTS. It's brand name is Procrit of Epogen in the US. It is a drug that increases your bone marrow production of red blood cells, this boosting your blood volume. It's very expensive, and comes with just as many, if not more risks, than IV saline. So if that is a legitimate treatment option, why shouldn't they let you give IV saline, which is fairly safe, a try.
IV fluids have changed my life, improved its quality so incredibly drastically. When I first went to Dr Grubb and he heard that I was showing up in the ER ever week or two almost completely unresponsive from a POTS episode he looked at me and asked "why aren't you getting weekly IV fluids????" I said "nobody will order it" with a shocked and disgusted look on his face and dug into his lab coat for his fountain pen and prescription pad and began to write with a flourish...
ReplyDeleteI now recieve 2 liters of D5 NS (5% Dextrose Normal Saline) 3x a week in my mediport. If you want to contact me to learn more about my fliuds therapy I have many videos about my journey with POTS and dysautonomia, vids on my steops to recieving my IV fluids at home ( steops from ER to infusion center to hope) vids of my accessng my port, hooking up to fluids, deaccessing, discussing, and just general POTS and daily life.
blessings, Milly
-Milly
IV fluids have been amazing for me! I have good veins, so for the past six months I have actually been able to get 3L a week through a peripheral IV placed by homecare. These fluids have gotten me out of being entirely in a wheelchair and stopped the terrible downhill spiral of deconditioning that I was in. My homecare nurse has documented my amazing change in baseline sitting heartrate-- I've gone from a sitting HR of 110 to a very respectable 80. And, even more importantly, I simply feel better. I can stand, walk, and sit for much more time than I was previously able to.
ReplyDeleteHow many people with POTS end up having to use IV's? I'm just curious. I just found out i have POTS a few weeks ago. I'm sixteen. My doctor prescribed Fludrocort and i will start that today. When i was getting blood drawn today there was a girl my age who had POTS and was on an IV for two hours or so. They just called it "Hydration" though. Is that the same? Thanks, any help would nice.
ReplyDeleteI'm currently trying to get iv fluids at home. I've been admitted 4 times in the last six weeks due to pots crashes, bp 71/40, HR 164. I live in the UK & I don't know anyone in the UK with POTS who has IV Fluids as a treatment. If their is anyone who knows someone in the uk with pots who has iv fluids at home then please please please can you forward me their details as I'm desperate as I cannot go on being admitted to A&E for IV Fluids every week.
ReplyDeleteGod bless. Helen -
I live have been diagnosed with POTS for about 10 months and am currently 38 weeks pregnant. Over the course of my pregnancy my symptoms have increased significantly. I have been trying to persuade my cardiology department to prescribe IV fluids. It turns out that you can have IV fluids at hospital or subcut (a needle/tube inserted just under the skin)fluids at home given by the Rapid Response Team. I ended up in hospital this weekend and I have now been prescribed and have just started a 2 week course of subcut fluids at home, 1litre overnight per night. I will let you know how it goes.
DeleteI live have been diagnosed with POTS for about 10 months and am currently 38 weeks pregnant. Over the course of my pregnancy my symptoms have increased significantly. I have been trying to persuade my cardiology department to prescribe IV fluids. It turns out that you can have IV fluids at hospital or subcut (a needle/tube inserted just under the skin)fluids at home given by the Rapid Response Team. I ended up in hospital this weekend and I have now been prescribed and have just started a 2 week course of subcut fluids at home, 1litre overnight per night. I will let you know how it goes.
DeleteI have bern dx'd w/POTS six months ago...after presenting my own info to my cardio...and 30 days in the hosp. Right now I am on no meds (tried cardizem, metoprolol, labetalol, and bystoloic-all dropped my even lower and had no real effect on hr. Triec midodrene but had allergic reaction...no fludrocortisonr for me bcys of low potassium. Super sens to meds)
ReplyDeleteafter the 30 days if hosp stay, I have been to er @ least 6 times...always feel better.after fluids....dont know how to get this tx at home...and am about.to lose my health insurance...what do I do then???
In response to anonymous who is about to lose his/her health insurance. Can you get COBRA or apply for some sort of federal/state health insurance? Also, low potassium, even without Flourinef, is common in POTS. I had low potassium before Flourinef too. I don't think that's a reason not to try it. Talk to you doctor about trying Flourinef, and adding a potassium supplement, and then have your labs done once a week for the first few weeks to see how your body adjusts. Good luck!
ReplyDeleteThx very much for your response! Maybe I will give florin a try then :) I had no idea alot of potsers had low potassium to begin with!z my hubby lost his job, and is waiting on ssd...there is no way I could afford cobra...and fo not qualify for state insurance...it stinks! Guess I will just have to wait until the opportunity to obtain insurance arises. This condition is not deadly right?? Just life altering and annoying??
ReplyDeletewe akso have 5 yr old, snd take care of my parents. My dr does not know much...if anything about pots...cant even assure me that its not dangerous...do u know if it is??
i am going to go read ALL of your blog now :)
Even if you don't have insurance, you may be able to pay for Flourinef with cash. The generic version of it, fludrocortisone, is fairly cheap. However, it's not a drug you should start and stop all the time, so you would have to be sure you could afford a few months of it before starting it, since it can take a few weeks to 6 months to see the full benefit of it.
ReplyDeleteIf you send me a post with your e-mail address, I can talk to you directly and I won't publish that post, so your e-mail will stay private. :)
As of a little over a month ago i started doing IV fluids every two weeks to eliminate the crash that i usually have and the results have been amazing! My doctor and i decided to do it every week now which will only make for a better impact. My tachycardia, blacking out, bp, and dizziness have all improved just from the fluids. Although, i do generally feel really crappy the day of the fluids but that goes away within a few hours of the treatment. I highly recommend it for people who haven't tried it yet.
ReplyDeleteHi
ReplyDeleteIntravenous saline works much better for me than any other medical interventions I have tried for POTS. Personally I only get minor benefit from dietary salt loading and drinking large amounts of fluids - and I find that it goes straight through me. Whereas the saline is amazing and lasts about 24 hours for me with a gradual return of symptoms. My ability to exercise, my orthostatic symptoms and my cognitive function all greatly improve within an hour of saline injestion.
In short, I believe there must be a physiological problem in POTS where the baseline plasma volume of blood is set too low in many patients. Dietary manipulation of even the injestion of florinef or licorice does not fully counteract this mechanism and saline seems the only way to fully improve this inbalance.
i am deff thiking of talking to my dactor about this i have had pots for 9 years an they have just finally did a tilt table test on me last month to clearfy 8 years of being told i was crazy not a good time at all but i am highly sensitive to medicine so i would rather do the most natural thing i can do i am deff going to look into this...my email is cortneyjohnson93@yahoo.com im 25 i live in massachusetts an i dont no anyone that has or has even herd of this im lost if anyone wants to talk with me please email me...
ReplyDeleteI am a physician who has started to use normal saline infusions for my POTS patients. However, I am wondering if anyone has heard of adding anything to the saline (such as magnesium) to make the effects last longer.
ReplyDeleteDear FibroMD,
ReplyDeleteI am not a doctor, but I have found through my own trial and error (supervised by my physician of course), that getting the saline infusion slower seems to make it last longer. I found that a rate of 100ml/hr was the ideal rate for me. I was getting my infusions overnight as I slept, but I understand that this is not practical for most patients.
What about combining it with oral Flourinef to help retain the sodium, and thus the fluid volume, longer?
I am told that Dr. Blair Grubb, who is one of the leading dysautonomia/POTS experts in the country, has come up with a "Dysautonomia Cocktail" he often prescribes to his patients. I am not sure if it makes the saline last longer in the body, but his patients seem to see improvement from it.
One of his patients posted the recipe for his Dysautonomia Cocktail on a POTS patient forum I belong to. I cannot be sure this is accurate, so perhaps you may want to call Dr. Grubb to discuss this. I have heard he is very nice.
-Dysautonomia Cocktail-
Magnesium sulfate 2 grams
Calcium chloride 1 gram
Ascorbic Acid 10 grams
Pyridoxine 100 milligrams
Dexpanthenol 1 gram
B-Complex 1 milliliter
Cyanocobalamin 1000 micrograms
Mix in 250 milliliters of normal saline. May be stored for 1 week in refrigerator. Must be warmed to room temperature prior to infusing. Do not microwave.
If you find any research studies or even anecdotal information on making the saline benefit last longer, please let me know. I'd love to include that info on this page.
Sincerely,
POTS Grrl
I've taken potassium for years, but didn't remember why. (I take a lot of supplements & meds.) Two years ago I went several months without it. By the time I made the connection my heart rate was high and erratic, and I felt weak and generally lousy. Within 3 weeks of the potassium I was much better. I still can't stand for very long, but am OK walking around the house etc.
ReplyDeleteI also take everything else in that cocktail except the dexpanthenol. I've no idea how the quantities I take compare.
I'm not on saline, and never had as severe a case of POTS as Potsgrrl, but the consumption of the electrolytes makes a huge difference in treatment for me. I still would like to try the saline.
Hey POTS Grrl :)
ReplyDeleteIm a med student with POTS and ive managed to get access to IV fluids. I have Magnesium infusions for my headaches which are in part attributable to POTS. The Magnesium is a potent vasodilator and depending on how fast its run in can make your POTS worse (I tried 1g in 500ml over an hr in NS [0.9%], made me woooooozy). I will next try 1g in 1L NS over an hour and when my brain kicks in and the osmolarity calculations checkout 1g in D5W NS! I would consider 1g over 2hrs in 2L NS/D5W NS would be the most asymptomatic form of administration. Im a fidget so during the night is a no no however the effect of IV fluid before bed is of interest of me as when I wake i feel hooorrrrible and nauseous.
I will be keeping a record of HR and BP as a crude measure of effectiveness.
Im interested in the potential benefit of D5W NS.
My suggestion would be that Magnesium has plentiful benefits but one needs to be cautious in its administration in you poor POTSies!
The literature supporting wide range of benefits may be found on pubmed.
Firstly oral dosing necessitates prolonged treatment and may cause loose stools and may aggravate GI issues in POTsies.
If you have difficulty getting it signed off please inform your physician that serum magnesium levels categorically do not exclude body insufficiency/deficiency states. Red Blood Cell (RBC) magnesium is routinely to identify Mg deficiency by physicians who are aware of the inaccuracy of serum testing, however the literature states that RBC Mg is somewhat inaccurate.
My reading leads to me to believe many of us are in some state of magnesium insufficiency particularly those suffering from GI disturbances and chronic stress. Docs tell me RBC comeback quite low in all patients they test with chronic illness
The appropriate and most easily accessible is IV Magnesium loading test there is a loooooong 8hr one and a short 1hr one :)
I wish every had access to fluids but It doesnt seem the case. A position statement seems to be order that patients can take to the ER or whatever IV outpatients facilities exist at their hospital. Im sure this would provide the confidence to sign off on fluids.
Im going to try and speak to one of the Profs I know to see if this is a possibility.
Thanks for what you are doing for everyone POTS Grrl :)
Dear Med Student,
ReplyDeletePlease send me an e-mail at potsgrrl@gmail.com. Through my blog and the Facebook group I am involved in, I have been connecting medical professionals who happen to have POTS together with each other. We have about 30 doctors, nurses, psychologists, and physical therapists.
We are forming a new non-profit that will raise funds for dysautonomia research and raise awareness about dysautonomia within the medical community and amongst the general public. One of the groups we are targeting for education programs are medical students and young doctors. We'd love to have you on board.
-POTS Grrl
I just found your blog googling "long term chronic saline" I am 24 and have been diagnosed with POTS for 2 years and i am finally getting a doctor in July that specalizes i POTS and wants to run that blood test on me! But I have been stuck in the hospital almost a week. I keep getting severely dehydrated drinking liters of water and not retaining water. Trying to treat that... I keep ending up in the ER every couple days or at times daily... I get short of breath, turn people, heart rate spikes, my blood pressure goes both ways, i feel almost high. They first tried to treat my severe asthma which didn't work (i told them this i know my asthma) saline i was 100% better until my body decide to dehydrate itself again. So they removed my saline to see what is wrong with my kidneys. Within 24 hours and me drinking ungodly amounts and not retaining anything. I had to be put on oxygen and saline again. The nurse watched my lips turn purple, then i had my asthma like symptoms, my heart messed up, almost passed out. Saline and now i am fearing ok :-). They were trying to start an IV again yesterday for my saline they turned on all my lights and raised my bed and my dizziness got worse to they thought it was a fear of needles. My momma had to explain to them it was my POTS and the lights the up and down was sending me thru a loop it was awful! But this gave me some hope! Momma (a critical care nurse) keeps asking the staff here to tell the docs PICC line and saline send her home once her kidneys stabalize! They've also talked to me about sending me out! This has giving me a bit of hope!
ReplyDeleteDear Criss,
DeleteI am not a doctor of course, but I would ask them to check your aldosterone levels. The same symptoms you described were happening to me too before I was on the proper meds. My aldosterone was low (and research from Vanderbilt shows that is is commonly low in POTS patients). I began taking Flourinef, which is a synthetic replacement for aldosterone, and it helped very much. But they have to test your aldosterone before your try the Flourinef, because you won't get a true reading of it otherwise.
Also, don't forget to drink electrolyte containing fluids - not just water. Pedialyte, coconut water, Propel, Nuun tablets and sea salt can help.
Good luck!
Hi, I loved your blog.
ReplyDeleteIve known I had POTS for over 4-5 years (maybe way longer as I have ME and dont know at what time in this disease the POTS happened) but till this year couldnt find a doctor to treat the POTS at all.
Ive passed out unconscious for up to 5 mins at a time (according to friend) and had another collapse only this week when going to the chemist. I cant leave my house alone at all due to the collapses as seeing I live alone, this is a BIG ISSUE for me. The low blood volume is really affecting my BP too.
In summer I was drinking UP TO 7 Litres per day in efforts to stop the dizziness (lots and lots of fluid does help)... I actually drank one time till I was vomiting everywhere just from trying to stop the POTS symptoms.
The doctor whos is currently trying to treat me with Florenif (which has had about a 30% improvement on me when also wearing medical support stockings, told me the other day there is nothing more he can do for me. Im now desperately trying to work out how I could learn to do saline IVs and some how treat myself as I have seem to have no other options.
If anyone can help me to get this treated more.. please email me on taniaaust1@hotmail.com (putting POTS in the title so i know it isnt junk mail ..thank you). Im in Sth Australia but due to the POTS and the collapses cant fly alone interstate to see a doctor.
Hey everyone,
ReplyDeleteI'm a fellow POTS girl. After years of feeling awful all the time, I finally got a diagnosis. I still feel bad a lot of the time, but much better than I was. I'm on blood pressure meds., florinef, salt tablets, sedatives., pyridistigmine, and a host of other drugs. I also wear compression stockings. But of everything, the thing that has helped the most is hands down, no question, saline infusions. They make me feel so good, almost normal again! Its really hard to find a doctor who will prescribe them, but don't give up. They have raised my quality of life so much. I wish everyone could have them. Anyone with POTS should definitely fight for them. I get 2 literal twice a week. I started about a year ago and can definitely feel the difference after getting them. They give me more energy, less dizziness, it is almost a high feeling to feel hydrated. It is a pain to be hooked up to an IV for a big chunk of the day, but it's worth it. Find someone and try it.
Does anyone get flare ups after exercise?
ReplyDeleteAlso do your POTS symptoms get worse as the day progresses?
Matt,
DeleteExercising was what made me figure out something was wrong with me. I used to be able to work out 5 days a week for an hour a day and then stress at work started making me feel sick. As the stress got worse it got harder for me to work out until finally last December I got so sick after a workout that I had to lay on a bench in the locker room for an hour just to be able to get the energy and strength to walk out to my car. After that I called my PCP and they told me I just had low BP and to drink more fluids. That wasn't a good answer to me since my job requires me to walk around and that was making me sick too.
And my POTS is pretty good when I first wake up, but then gets really bad about 4 hours after (especially if I eat) and then I feel ok again for awhile after that. I feel best when I lay down though and I feel ok if I'm sitting as long as my legs are crossed or up on the couch with me.
Matt--I know this is almost a year late, but I've had POTS forever and just got dx a month ago and I'm like, OLD. and yes despite what dr. Grubb says it usually is better in the morning, I get worse and worse. I've just started my home IV BUT unfortunately it's all wrong for me, it's currently 2liters twice a week overnight, but I need one liter EVERY day, not twice a week. The way I pee, that two liters is gone in six hours flat! When the primary was giving it to me every other day I was better with that but m y so-called POTS doc (can't blame him really he's a peds doc so not used to middle aged women) switched it to the 2liters twice a week, I just knew it wasn't going to cut it and I'm right. I'm lucky to have a home nurse but she can't wrap her head around a bendy, barfing, sweating person in bed with high blood pressure from being dehydrated-- thinks I "get too much salt" ha ha from the 2liters of plain saline and THAT must be the reason my BP is jumping around-- I'm saying "more salt" with every gasp. IT's a paradigm shift that most people just can't make I guess, but my idea of paradise now is a litre in the arm every day and I'd feel good enough to divide Gaul into three parts!!
DeleteXloreix and Matt - I'd also recommend compression pants - I found the under amrour biker shorts helped me get through the day - else I would only have a few hours like Matt. Keeps the blood circulating. My blood pools in my legs - it feels warm to the touch - so not sure if would have same effect - but easy enough to try.
DeleteAlso - if you collapse or get really tired - put an ICE pack on your bottom of your feet. Instantly sends blood to your head. Very effective if you collapse or just need a boost; Not real pleasant but works. My kids also know to get ice when I collapse if they can't get my IV.
I have had POTS for 9 years and IV saline also changed my life in an AMAZING way (went through 3 picc lines, 2 - ). When I do collapse, my 5 year kid knew to get my IV pump and help hook me up. I am so much better
I went from 2 good hours a day to being able to work full time (until a car accident aggravated by POTS and I back where I started, but that is another story).
I did get two bad very scary infections with the port (be sure they don't always access the same spot or skin breaks down after a few years of getting poked every week). But I am still doing it - cause its better than totally missing out on life.
Hang in there.
I totally believe IV saline helps! I was on bedrest throughout my pregnancy.. Feeling awful like usual.. Then my water broke a month early and they wanted to have me wait 2days since i wasn't in active labor yet, to give me the steroid to benefit the babys lung function.. So for over 2 days a had an IV drip.. i remember i went home and it was the best i felt in a long time! I had energy! we were totally ready for the little one yet and still had shopping to do and i was walking around the mall! People didnt believe i just gave birth... But this was the best i felt in so long i was taking advantage of it! Then slowly my symptoms returned and even worsened because i got so lightheaded i missed a step on the stairs going down, and sprained my ankle so bad i couldnt put weight on it for Weeks! So i was in bed more and more. Then there was the E.R. visit because the symptoms were so bad they scared me. Actual anxiety and POTS is a horrible mix. They gave me 2bags IV fluid thinking i was dehydrated because the only thing that they tested that was off was my lying, sitting, standing test..which was at 30 beats. So after that i felt better butt three episode was so bad i still felt wiped out.. I know IV saline helped. It made a big difference.
ReplyDeleteHey, POTSgrrl! Ever run across anyone who knew they got POTS from blood loss or blood donation? Seems like most people don't know the cause of their POTS, but mine started immediately after they took the needle out of my arm after donating blood for the first (and last) time. Two ER trips where I received saline IVs which definitely helped, but then was admitted to the hospital less than a week after the donation. I'm fortunate to have been seen by a Dr familiar with POTS on just the third day in the hospital. He diagnosed me and that was later confirmed by tilt table test.
ReplyDelete