Study Points to More Effective Treatment than IV Infusions for Low Blood Volume in OI, POTS

Just in the nick of time, we finish October with a post for Dysautonomia Awareness Month! Back in March of 2016, the Zebra Pit published a post about an upcoming study of oral rehydration salts (ORS) as an effective therapy for dystautonomia. The study was finally completed and published in July of 2019, in The Journal of Pediatrics. Learn about the results of the study, how it was conducted and what it said about the use of ORS versus that of saline infusions.

What is ORS?

Oral rehydration salts (ORS) are a mixture of glucose, potassium, and sodium. ORS was developed by the World Health Organization in the 1940’s to use as an oral rehydration therapy, in place of IV administration. When mixed with water, ORS has been proven to be effective to replace necessary electrolytes that have been lost to acute diarrhea or vomiting caused by diseases such as cholera. ORS is an essential medicine of the WHO, and has saved countless of lives that would have otherwise been lost.

Study Findings

In recent years, studies are starting to show that ORS can also be used as a short term treatment for those with Orthostatic Intolerance due to dysautonomia as well. The study sought to understand the efficacy of ORS and IV saline and whether it could increase blood volume, thereby reducing the effects of OI in the short term. In 2016, the NIH announced it was funding the study conducted by Dr. Marvin Medow, concerning the benefits of ORS with ME/CFS patients who have OI.

Dr Medow tested a total of 35 people with OI and ME/CFS between the ages of 15 to 29. A portion were given placebo, while others received either a litre of saline intravenously, or an oral dose of ORS. After administration, the patients were placed in a lying position, with the lower half of their bodies covered in an airtight chamber,also known as an LBNP tank. The patients were then subjected to varying negative pressure. The pressure was gradually increased until each patient reached particular levels of OI. The testing was grueling: Most of the patients passed out at some point. My heart goes out to these patients and their bravery, but it seems their hard work has paid off. Not only did they prove both IV and oral rehydration salts to be quite effective in treating OI, but they figured out that one is actually more effective than the other:

The study revealed that both saline and ORS are effective in the short term treatment of OI. However, the ORS, with it’s combination of sugars, potassium and sodium, was proven to be even more effective than the saline. While simple sodium can help raise blood volume, ORS still seems to be the better option, according to this study. Better yet, ORS is readily available, as well as affordable and it doesn’t require a visit to an infusion center or the use of ports and is obviously much less invasive, providing fewer risks than any venipuncture.

These concerns were what led Michelle to conduct her own study of the use of ORS to improve her POTS symptoms. Michelle has been taking ORS to treat her Orthostatic Intolerance (OI) for nearly three years. It’s proven to us that it can be quite effective and has been a staple in our household for a few years now! I even take it to help keep my own low blood pressure from becoming a problem.

ORS Caveats

Before jumping on the ORS bandwagon, it’s important to note that there are also some potential drawbacks to its use long-term that weren’t addressed in the short term study. Potassium is a very important substance for heart health, and it’s quite possibly part of the reason why ORS is more effective than IV saline, along with the glucose that it contains. However, potassium is something that needs to maintained within a certain range, as too much potassium can also have terrible side effects and fatal consequences.

High potassium levels in the blood can cause kidney failure, type 1 diabetes, Addison’s disease, or heart failure. Before starting any regiment of ORS you should consult with your doctor about whether or not this therapy is right for you and conduct preliminary testing, in addition to doing occasional spot checks to ensure your levels remain within a healthy range.

How often you need to supplement with ORS will largely depend on the individual and may take a bit of trial and error. Intermittent testing can help you get to the right level. For Michelle, who gets more potassium in her diet, it takes a lot more sodium than potassium, so she only supplements 1-2 x per week with ORS, while drinking water infused with sea salt and a small amount of glucose daily.

Some people may also have a hard time adjusting to the taste of ORS. Lucky for them, there are oral rehydration salts that also come flavored. Either way, you get used to the flavor and really come to appreciate the effects. In the end, Michelle decided learning to get used to salty beverages is by far preferable to higher risk, more expensive IV saline.

Where to Find ORS

Oral Rehydration Salts are easy to find, but not with the correct amounts of sodium, potassium and glucose. They also tend to focus more on flavor than quality and are not true WHO approved brands. Trioral brand is the only one I’ve found that is WHO approved and is conveniently available on Amazon:

• TRIORAL – Oral Rehydration Salts ORS comes without flavoring and is by far the most affordable and potent product I’ve found. I buy the box of 100, but there are also boxes of 15 & 50. The more you buy, the less they cost.
• TRIORAL Natural Lemon w/Stevia Oral Rehydration Salts is the same great ORS product from tri-oral, only it has natural lemon and stevia for flavor enhancement. They appear to only have one option, a pack of 25.

Don’t need the potassium? Try putting up to a 1/2 teaspoon of natural sea salt into your water several times a day and add a little sweetener, which helps the body to absorb sodium. If you supplement with salt alone, you want to make sure it’s natural and not iodized table salt. You’ll also find you run through it quickly, so it’s good to buy in bulk. We like these brands and types:

• Light Grey Celtic Sea Salt Resealable Bags – Additive-Free, Delicious Sea Salt – We recently tried Celtic Grey to see if there was a difference. We found it to be a pleasant sea salt that isn’t too bitter and dissolves really well, so you don’t even need to grind it.
• Sherpa Pink Gourmet Himalayan Salt – 2 lb. Bag Coarse Grain – A little easier to bear than plain white sea salt, in my opinion.

No matter how you choose to supplement, it’s important for people with dysautonomia to get enough salt, glucose and potassium. As the highlighted study shows, it can have a huge impact on blood pressure levels, which means fewer dizzy spells on standing, less fatigue and improved symptoms over all. Sometimes medications are also needed to help manage this complex condition, but the first line of defense should also include these important electrolytes, which should be monitored periodically through testing. Remember, any and all changes to your healthcare regimen should be discussed with your care team first.

Do you already supplement with ORS or a similar product? What are some of the benefits you’ve found?

Resources and Further Reading

• Medow, Marvin S. et al. The Benefits of Oral Rehydration on Orthostatic Intolerance in Children with Postural Tachycardia Syndrome.The Journal of Pediatrics, Volume 0, Issue 0. Accessed on 10/02/19.
• Healthline: High Potassium. Accessed 10/17/19.
• Rehydration Project. Oral Rehydration Therapy. Accessed 10/2/19.
• Nalibow Ruxin, Joshua. Medical History. “Magic Bullet: The History of Oral Rehydration Therapy.” 1994,38:363-397.

David Curtis lives in Florence, KY with his wife Michelle, 2 Russian Blue cats and his many fish. David manages the pet department of a prominent retail chain in addition to caring for his wife, pets and home. In his spare time, he enjoys reading, exploring history, watching football, sci-fi, fantasy or comic book shows and film, along with fighting for truth, justice, and the human condition. Much like Tyrion Lannister, he also drinks (coffee) and knows things.