Exercising is one lifestyle change you can make to treat Postural Orthostatic Tachycardia Syndrome (POTS). You may be groaning, or you may be cheering, depending on how you view exercise. If you hate exercising, hear me out. Exercise is arguably one of the most beneficial lifestyle changes you can implement to improve your quality of life with POTS—and the Levine Protocol can help you get there.
A quick note before diving in:
Everyone experiences POTS differently, so any treatment will have varying levels of success for people. Any suggestions in this post are based on research and my personal experience exercising as a POTS patient. Always consult a doctor before starting this or any new exercise program.
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What’s the Levine Protocol?
Dallas cardiologist, Benjamin Levine, created a progressive exercise program specifically for POTS patients, and he named it—you guessed it—the Levine Protocol. One of the best parts about this protocol is that it’s a step-by-step guide. Everything you need to know, including how many days a week to exercise, how long each session should last, and what type of exercise to perform, is printed on an easy-to-follow chart.
Similar to the Levine Protocol is the CHOP/Dallas Modified Program, which you can download a copy of online to show and discuss with your doctor.
The Levine Protocol is similar to the CHOP/Dallas method, except it includes Pre-Month 1 and Pre-Month 2 options prior to the start of the actual program. This is ideal for POTS patients who are either bedridden or severely exercise intolerant. Ask your doctor where the best starting point for you would be.
Breaking Down the Levine Protocol
The Levine Protocol for exercising with POTS has multiple aspects that I’ll break down for you:
1. The protocol provides formulas for finding your target heart rate zones for different levels of exercise intensity, or “paces.” These paces include recovery pace, base pace, mid-maximal steady state (MSS) pace, race pace, and interval pace. You’ll need to calculate your training paces before beginning the program. Ask your doctor for guidance if you need help!
2. Each session tells you what type of exercise to do. This involves a mix of cardio exercise (either recumbent, upright, or both) and strength training. To start, you’ll complete three cardio sessions and two strength training sessions per week. Most people start with only recumbent cardio exercises, such as recumbent biking, rowing, or swimming. Strength training sessions focus on lower body and core strengthening.
3. The Levine Protocol also tells you how long your workouts should last, along with the pace, or intensity, of how hard you should be working. Over the weeks and months of the program, the time spent exercising, along with the exercise intensity, gradually increases.
4. After every MSS pace training session, you’ll need to complete a recovery workout the following day. This can be anything that keeps your heart rate in the recovery zone for the designated time. Usually, I went for a short walk at a comfortable pace.
5. The Levine Protocol allows for flexibility in your exercise schedule. If you can’t complete all the exercise sessions for a week (from illness, traveling, etc.), or miss more than two cardio sessions for a week, then you’ll need to repeat that week. Or, if you feel you aren’t ready to progress to the next week/month, you can repeat the previous week/month. The whole “listen to your body” concept is critical for exercising with POTS!
The Research on Exercise and POTS
Benjamin Levine has conducted many studies investigating the effects of exercise on POTS. According to a 2014 study conducted by Levine and his colleague Qi Fu, “Many patients can be ‘cured’ or at least palliated substantially after a period of exercise training or increased physical activity.”
In this same study, Fu and Levine explain how POTS patients generally have low levels of physical fitness. This also means they have lower cardiac outputs (amount of blood pumped by the heart per minute) and lower stroke volumes (amount of blood pumped per heartbeat) compared to healthy controls.
Fu and Levine found that a 3-month exercise program increased not only stroke volume, but also cardiac output, mass, and size. Blood volume and peak oxygen uptake (VO2) also improved. Because of these changes, participants had lower heart rates during exercise sessions and during recovery.
Basically, the more fit participants got, the better their cardiovascular systems functioned!
Another more recent study from 2021 found that after 6 months of cardio exercise, participants with POTS experienced a significant improvement in their cardiovascular function and quality of life.
So, if you want to improve your POTS symptoms, exercising is something you should seriously consider.
My Experience With the Levine Protocol
By the time I received my POTS diagnosis, I had already been exercising for while, doing what I could tolerate. So, when I started the Levine Protocol at Month 1 on a recumbent bike, two things happened.
First: I had a very difficult time getting my heart rate high enough because I had already been exercising on an upright bike for months. So, my body had already gotten somewhat accustomed to semi-upright exercise.
Second: My sciatic nerve did NOT like the recumbent bike. Within two sessions, I got a flare-up so bad that biking was out of the question for a full two weeks.
So, right off the bat, I had to reassess my approach. That’s when I re-read the entire Levine Protocol and remembered that some people may begin in different places depending on their fitness level.
I realized that getting my heart rate in the target range for the designated time, without feeling severe rebound symptoms for 24-48 hours after my workouts, is the most important thing.
So, I returned to the upright bike. While I pedaled away, I kept a very close eye on my heart rate using a Fitbit watch, like the Fitbit Sense. If my pulse exceeded the target range, I slowed down. If my pulse stayed too low, I either added more resistance or pedaled faster. I found wearing a smartwatch to be vital during exercise, as monitoring my heart rate was the basis for knowing if I was working out too hard or not hard enough. The Cleveland Clinic recommended that I also wear a chest strap monitor during exercise, so I also bought a Polar H2 heart monitor chest strap that synced real-time heart rate data to my phone.
As far as following the Levine Protocol goes, I shifted around what days I completed what workouts. Usually, I took a rest day after 2-3 consecutive days of exercising. (Example: Cardio day, strength training day, cardio day, rest day.)
In the beginning, I sometimes tried strength training after cardio (as the protocol allows), but it exhausted me too much. Even still today, I don’t usually combine cardio and strength training days. If I do, then I’m only performing 2-3 strengthening moves or a 10-minute core workout.
I definitely took the program at my own pace.
I progressed to tolerating upright exercise on schedule with the protocol, but it took me a little longer to progress through the last two months. This was because I started with walking and slow jogging intervals once I was okay to incorporate upright exercise, and I had to give my body time to adjust to the new exercise.
I made slow progress, but I did make progress, and I did get a lot better!
I progressed by listening to my body, as I said before. If I became too symptomatic within the next day or two after walking/jogging (or any exercise), then I knew I did too much and needed to scale back. Keep this in mind throughout your own exercise journey!
How Exercise Has Improved My POTS Symptoms
In the beginning, I felt very fatigued after exercising. But once I got past the first 2-3 months, I started to see improvements in my symptoms. My exercise tolerance increased. My stamina improved for performing daily tasks and walking from place to place. I grew stronger. Time spent tachycardic while standing reduced.
When I went for my 6-month check-up at Cleveland Clinic, my heart rate still spiked when I stood up, BUT it didn’t spike as high and it recovered quickly. And I truly believe that my six months of dedication to exercise played a huge role in that result.
I was able to work back up to running with POTS (not well, as I’ve mentioned almost too much on this blog already—LOL), and last Halloween (2023), I ran my first 5k since my diagnosis. I can spend more time on my feet without tiring. I even took Zumba classes to get in shape before my wedding! While I’m currently in a spell where I can’t tolerate running well again, I’m confident that I can work back up to it by following the Levine Protocol again.
Final Thoughts on The Levine Protocol
According to Dr. Levine, exercising can worsen your symptoms when you first increase your activity levels. This is particularly so if you’ve been bedridden or haven’t been able to tolerate much physical activity.
That said, there’s a chance you’ll experience some discomfort with exercising at first. I was definitely more fatigued than usual in the first 2-3 months. It was discouraging until I learned that feeling that way is NORMAL.
It’s important to remember that everyone is going to begin at a different point, and everyone will progress at various rates. Some people may only be able to tolerate a few minutes on a recumbent bike to start. Others may be able to handle beginning with a few cardio sessions per week. Everyone’s POTS case is different, so everyone’s journey with exercise will directly reflect that.
But stick with exercise as best as you can. Exercise tolerance doesn’t come overnight, but your body will adapt to the increase in activity and grow stronger day by day, workout by workout.
Olympic athletes train for their sport for years and years before they get to the fitness level needed to garner a spot on the winner’s podium. You can’t expect that you’ll be able to restart upright exercise, or yoga, or dance classes, or running, or whatever form of exercise was your kick before you had POTS in only a month.
It takes time. You have to be patient with yourself, and above all, remain consistent, persistent, and disciplined with your exercise routine.
Maybe you’re not training for the Olympic Games, but you’re training for your quality of life. For your health and wellbeing. That’s your gold medal. And guess what? No one is competing against you! That spot on the winner’s podium is waiting for you to claim it. You just have to put in the work.
So believe in yourself and don’t give up! It may not be easy, and there may be days when you want to quit, but please don’t. You’ve got this, POTSie friend.
And take a peek at my top POTS products page to check out items to get you on your way with an at-home exercise program.