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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.

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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:

Changes in normalized orthostatic index (% of that measured without treatment in control (black bars) and subjects with POTS with orthostatic intolerance (gray bars) measured following no treatment (Untreated), after infusion of IV saline, and after ingestion of ORS. Neither saline nor ORS increased orthostatic tolerance in untreated controls (P = .46; n = 15), whereas both IV saline and ORS significantly improved orthostatic tolerance (*P < .05 and **P < .001, respectively; n = 10) in subjects with POTS.” Dr. Medow, et al.

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:

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:

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

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.

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Dysautonomia and Achieving a Better Quality of Life Through Exercise – The Unchargeables

Written by Capricious Lestrange for The Unchargeables October 2, 2018 and reprinted with permission. The original can be found here: Dysautonomia and Achieving a Better Quality of Life Through Exercise – The Unchargeables

Did you know that regular exercise can actually improve the symptoms and quality of life for POTS patients more effectively than a beta blocker? While doctors often reach for the prescription pad to cure our healthcare issues, diet and exercise are often key players in health issues, and dysautonomia is no exception. For many, a combination of medications, along with changes in diet and exercise is the answer to achieving their best health with the many conditions that fall under the dysautonomia umbrella. Exercise is an integral part of that equation. I didn’t see significant improvement in my own Postural Orthostatic Tachycardia Syndrome (POTS) until I began to incorporate exercise into my daily routine.

The Supporting Evidence

When beta blockers were compared to exercise over a three month trial, it was found that while both decreased heart rate, the medication did little to make patients feel any better, while exercise impacted the overall quality of life for patients. “The exercise worked better than the medicine to restore upright blood circulation, improve kidney function and quality of life, all problems in POTS, the researchers say (Exercise).”

Of course one doesn’t just start doing jumping jacks or running track with dysautonomia. The first thing you want to do is speak with your doctor and get cleared for exercise. Your doctor can also help you choose a healthy target heart rate and ranges for cardio exercise. It may also be a good idea to work with a physical therapist to help you decide what level of exercise to begin with and what’s safest for you. Dysautonomia International suggests that some patients may even benefit from a cardiac rehabilitation program.

Modifying Exercise for Dysautonomia

How much energy we expend can be just as important as the type of exercise. In fact, exercise intolerance in dysautonomia is very real and many of its accompanying primary or comorbid conditions like MCAS or ME/CFS. Exercise intolerance means that an increase in activity can cause an increase in symptoms for an illness, most notably fatigue levels. Where the confusion comes in with this concept is that people assume that any exercise becomes problematic for someone with these conditions and that’s simply not true. What it does mean is that we have a lower threshold of tolerance than healthy people and we need to modify how we exercise.

20CEF342-4CF5-40EF-9447-3D5B31F3DA97-300x300For people with dysautonomia, this means avoiding exercise in an upright posture along with monitoring how much energy we expend. The first part of this equation is pretty easy to understand; we want to partake in exercise that can be done from a sitting or laying down position, such as recumbent biking, rowing, or swimming for our cardio. If we lift, we want to do so in a sitting position. Things like dance classes and barre should probably be eschewed for spin class, pilates, and yoga, while still avoiding certain positions. It’s all about being safe and not giving our intolerance to standing the opportunity to rear its ugly head.

Pacing for exercise intolerance is a bit trickier. No one can tell you where that wall is for you and the best thing is not to find it, but to strenuously avoid finding it, as it can take several days to recover from triggering your exercise intolerance. We all know what it is, because it’s that feeling that usually makes us say “Oh no! I think I overdid it!” as we feel the state of our health crumble like a cheap facade. But how to avoid it?

8 Tips for Pacing Yourself

  1. Forget the no pain no gain bull. That’s not for spoonies.
  2. Count exercise in your spoons. Your exercise is part of your health care and necessary to staying/becoming healthier. It should come first, but if you have something else to do in a day that’s going to take more spoons than you have, exchange it with your exercise to avoid triggering your intolerance.
  3. Start out at the appropriate level of exercise. Avoid straining your muscles. You DO NOT need to strain your muscles to build them.
  4. Do an appropriate number of reps. Even if it’s only 1 set of 10 or 3 sets of 5, you’re still getting the work in. Good for you!
  5. If you wake up already fatigued, hydrate and supplement with salt. Take a break or decrease the number of reps if rehydration doesn’t help.
  6. Keep in mind that upright exercise will always cost you more spoons, so if you exchange your 3 mile recumbent bike ride for a trip to a park to walk 2 miles, the walk to the park is going to cost more spoons.
  7. Keep a journal of your exercise to ensure you’re gradually increasing your exercise and offering yourself enough challenge without regularly triggering your exercise intolerance.
  8. Try not to take breaks longer than 1-2 days. Decrease workouts rather than cut them completely to avoid losing ground.

Since I was bedridden when I started out, I had to start out very slowly, using simple exercises that can be done in bed. I wasn’t just fighting exercise intolerance, I was fighting serious muscle deconditioning, which can contribute to the severity of dysautonomia and the level of exercise intolerance you may experience. The last thing you want to do when starting a new exercise program is trigger exercise intolerance. You want to start out gently, doing exercises you’re confident you can do at a number you’re sure won’t make you sore or wear you out.

Find a Physical Therapist to Help You

While I did this rehabilitation alone, it is probably better to go through an approved therapy program that’s arranged by the doctor caring for your dysautonomia. You really need someone who can direct your practice and ensure you’re not only performing exercise that’s safe for your condition(s), but also appropriate for your starting level of fitness to avoid any injury. While I’ve always been a bit of a do-it-yourselfer, I say this because ultimately I ended up in therapy later, attempting to correct all the weakness that remained because I was either not doing exercise to target those specific areas or I was doing them incorrectly and hurt myself. I could have saved myself months of pain and hassle had I just gone and requested the therapy in the first place.

It may be frustrating to start out so slow and you may be bored, but don’t worry. You’ll be amazed with how quickly your stamina increases and soon you’ll be able to take on more. The great thing about working within our own limitations is that those limitations become less constraining quite quickly. Before you know it, 10 minutes will become 15, 15 will become 20 and before you know it, you’ll be devoting a whole hour to ninety minutes a day exercising. Even if you can only last 5 minutes to start, you’re getting somewhere. But you can only get somewhere if you keep going.

No matter what level you’re starting at, it may be possible to work your way up to unmodified, upright exercise. This can be largely dependent on comorbid factors, but dysautonomia is not an incurable condition for everyone and while well controlled, some of us with it can lead almost normal lives, which includes normal exercise. For example, by the end of the previously mentioned study on exercise versus beta blockers, 10 participants could no longer be diagnosed with POTS at the end of the three month trial (Exercise).

Every Patient is Different

As someone with POTS as a secondary diagnosis to EDS and MCAS, I may always rely largely on my recumbent stationary bike for my cardio. However, I’m also able to incorporate occasional upright exercise as well, such as walking at parks, stair climbing, and light aerobic exercise. Not too shabby for a former occasional wheelchair user. Actually, it’s been over a year since I’ve pulled my wheelchair out for any reason, even attending museums, festivals, concerts, sporting events, malls and parks with nothing but my own two legs to carry me.

Like many, I use a combination of meds, exercise and diet to manage my dysautonomia. I enjoy fewer symptoms, greater stability of health and more freedom overall because I’m no longer worried about passing out in public every time I leave the house. Finally, exercise is a great way to feel more in control of my illnesses and in touch with my own body again.

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Remaining Upright

womanApproach to Orthostatic Intolerance Presented by Melissa Cortez, DO presented at the Bateman Horne Center on April 6, 2016.

A note from the Editor: This article was last checked and updated on 4/6/2019. Thank you.

This is a very interesting presentation on one of my favorite subjects of late, Orthostatic Intolerance (OI). Dr. Cortez explains in detail how NMH and POTS effects the body, how they are properly diagnosed, some conditions that need to first be ruled out to properly diagnose OI, and the best known ways to treat each kind. The presentation itself is only about 40 minutes long and it’s well worth the time. Dr. Cortez lays it all out in mostly easy to understand laymen’s terms.

I really love the educational programs at the Bateman Horne Center. It seems like they really have their finger on the pulse of the latest and greatest treatments and protocols for ME/CFS and Fibromyalgia. To learn more about them and utilize their extensive collection of research and resources, visit their website.

You can view the presentation slides here. If you don’t feel like viewing the entire presentation, here are some of the most helpful slides from the presentation:

slide1slide2slide3slide4slide5slide6slide7Since it is not made clear on this last slide, I wanted to note this exercise regimen is specific to POTS ONLY. Exercise is NOT RECOMMENDED for NMH and can be prohibitive with NMH. For full details on these slides, please view the video. Thank you!