What is the Levine Protocol? How does the Levine protocol help POTS/dysautonomia?
The Levine and Dallas/CHOPS Protocol are exercise-based physical therapy regimes to lessen the symptoms of POTS/dysautonomia. Many patients with these syndromes struggle with standing and exercise intolerance, so the goal of these exercise plans is to improve those intolerances.
Exercise and standing intolerance varies from person to person. For one person with POTS/Dysautonomia, it can be difficult to stand for longer than 30 seconds. For another, perhaps symptoms don’t become noticeable until 15 or 20 minutes after standing.
For some people, walking can be relatively easy, but going upstairs is incredibly difficult. For others, simply sitting up causes an exacerbation of symptoms. You may even be able to run but hills are a major struggle.
No matter where you lie on the spectrum of standing and exercise intolerance, the purpose of the exercise protocols is to improve your ability from where you are currently.
Why is exercise important for POTS and dysautonomia?
There are many reasons why exercise is one of the most important tools you can use to manage your POTS/dysautonomia symptoms:
- In people who have POTS and low blood volume, regular exercise can increase blood volume in the body, thereby decreasing your POTS symptoms due to increased blood pressure.
- In people who have adrenaline surges and anxiety, exercise has been shown to improve anxiety symptoms. Exercise also burns off excess adrenaline, which decreases the amount of adrenaline circulating throughout your body.
- Exercise helps retrain your brain to recognize when it is appropriate to increase your heart rate (during activity) and when to decrease your heart rate (during rest).
- Exercise prevents deconditioning, which is a common problem for individuals who are inactive due to illness. Deconditioning alone can exacerbate POTS immensely.
- Exercise increases muscle mass in your heart and improves your heart’s stroke volume. Together, these improvements will lower your resting heart rate and improve your heart’s ability to tolerate more vigorous exercise.
- Exercise improves your body’s ability to tolerate other forms of activity.
What does research say about exercise and dysautonomia?
POTS/dysautonomia is a difficult syndrome to treat because the underlying causes are still unknown for many patients. One hypothesis researchers are investigating is the role deconditioning, low blood volume, and heart atrophy (small hearts) have in POTS/dysautonomia.
Many POTS patients have been shown to have small hearts and low blood volume, making it likely that treatment options, like exercise, can improve outcomes for them as exercise increases heart mass and blood volume. It is for this reason, that POTS is sometimes nicknamed the “Grinch Syndrome.”
Dr. Benjamin Levine spearheaded the formation of an exercise program for POTS patients at the Institute for Exercise and Environmental Medicine in Dallas, Texas. His team’s research resulted in the creation of the Levine Protocol.
In one of his earlier studies, Dr. Levine found that 52% of the patients who completed his three-month exercise conditioning study no longer had POTS. All patients who completed his study found that exercise helped improve symptoms.
Later, Dr. Levine and his lab focused on stroke volume and POTS. Stroke volume is a measurement of how much blood your heart’s ventricles are able to pump out per beat. A lower stroke volume means your heart is unable to pump blood as strongly throughout your body, which can cause symptoms such as dizziness and fatigue when your heart needs to pump faster (i.e. standing with POTS and exercise).
If your heart cannot effectively pump out blood, then it will beat faster to compensate. Sound familiar to anyone?
In the 2012 study conducted by the Levine lab, it was shown that exercise training helped improve stroke volume in patients with POTS, which reduced their exercise recovery times and lowered their heart rates during exercise and at rest.
In 2016, a massive study was released in which 251 patients with POTS were enrolled in an exercise program. 103 patients finished the program and 71% of those patients were in remission.
You might question the effectiveness of this study if over 50% of those enrolled didn’t complete the study. But let’s review what it takes to complete this study: 6-7 hours per week of exercise time plus time to recover. It is not shocking that patients who work and enroll in this study find it difficult to complete all of the tasks in the required timeframe for the study.
Also, this study was done in a “community setting.” This means that patients were given directions through other physicians across the country and may not have had access to physical therapists specially trained in POTS.
Exercise and POTS/dysautonomia: next steps
So perhaps I have convinced you that exercise is a treatment option for POTS/dysautonomia. These studies were done primarily on women and those without conditions like Ehlers-Danlos Syndrome (EDS) and Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS).
The Levine Protocol and similar exercise regimes are not suitable for every person with POTS/dysautonomia, but it is a conversation that could be beneficial to have with your cardiologist.
Interested in learning more about the latest research in non-medication options for POTS/dysautonomia? Check out the latest review article published in 2018 here.
Want to hear about exercise with POTS from a patient’s perspective? Check out these articles:
How the Levine Protocol Improved My POTS/Dysautonomia
Even Top Athletes Can Get POTS: A Physical Therapist’s Personal Journey with Dysautonomia
Athletes with Dysautonomia: Tips and Tricks to Battling POTS
What is Physical Deconditioning with a Chronic Illness?
Hmm. Interesting. Thanks for sharing about the Levine protocol. I was just diagnosed with dysautonomia the other day and they did prescribe graded exercise and Ill be taking mestinon. The original diagnosis was ME/CFS, so it was interesting to read that it worked for patients who were not diagnosed with ME/CFS. I’m really hoping this protocol will be beneficial for me.
I had Covid in November 2020. I experienced POTS like symptoms a month and 1-2 after acute illness. I don’t get dizzy anymore but heart rate is still high. I recently started getting adrenaline surges especially at night. ALL. NIGHT. LONG. In the past 7 nights, 4 nights have been no sleep whatsoever! I also feel these adrenaline surges during the day. Started taking propranolol prescribed by my cardiologist. It has helped my heart rate come down but not the adrenaline surges. Not sure what to do?
Hi Carol, definitely understand the adrenaline surges! For me, calming down my whole body and exercise has really helped my adrenaline symptoms. You can learn more about this here: https://chronicallysalty.com/2018/05/23/adrenaline-surge-and-pots/
How much salt does Dr. Levine recommend to consume?
Hi Sam, Thanks for the read! Your salt intake should be an amount discussed with your doctor, as everyone’s needs are different. I have seen recommendations for a minimum of 3 grams per day for someone living with POTS and know that it can go up to 20 grams a day. However, it is super important to discuss these changes with your doctor before salt loading that high, as it can affect other health conditions you may have. I found this resource that might be helpful for you: https://bynder.uwhealth.org/m/7708997dfc08eb4/original/POTS-Dysautonomia-Treatment-Plan.pdf
How you obtain this information ?
Hey Melba, thanks for the read! You can check out the public version (Dallas/CHOP protocol) here: https://chronicallysalty.com/pots_dysautonomia_research/. A local cardiopulmonary rehab specialist (physical therapist) can also help you start the protocol. Please be sure to talk with your doctor (i.e. cardiologist) beforehand.