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The Levine Protocol For Exercising With POTS


Exercising with POTS is another lifestyle change you can make to improve your symptoms. You may be groaning, or you may be cheering, depending on how you view exercise. If you’re cheering–woo-hoo! I don’t need to convince you to exercise. But, if you’re groaning, hear me out. Exercise is arguably one of the most beneficial lifestyle changes you can implement to improve your quality of life with POTS.


Before we get into it, here’s a disclaimer for what’s to follow: 


Everyone experiences POTS differently, and therefore, any treatments 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.

Exercising with POTS using the Levine Protocol


This blog post contains affiliate links, and I may earn from qualifying purchases at no extra cost to you. Full disclaimer here.


Research on the Benefits of Exercising With POTS 


With POTS syndrome, many people (myself included) experience both orthostatic intolerance and exercise intolerance to some degree. Now, you may be asking, if we’re intolerant to exercise, then why in the world are you suggesting we do it?


I’ll tell you why!


Dallas cardiologist and POTS researcher Benjamin Levine has conducted multiple 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/minute) and lower stroke volumes (amount of blood pumped/heartbeat) compared to healthy controls. 


Stroke volume, in particular, seems to be very important according to other research as well. 


A major takeaway from a 2007 study is that POTS patients experience lower stroke volumes compared to controls while supine and upright, both during exercise and at rest. They then experience higher heart rates in response. This happens because their bodies must work harder to compensate for the smaller amount of blood pumped with each heartbeat. These results suggest that low stroke volume accounts (at least partially) for the tachycardia present in POTS patients.


Fu and Levine found in their 2014 study 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). This resulted in lower heart rates during exercise sessions, as well as during recovery afterward. 


Basically, the more fit participants got, the better their cardiovascular systems functioned!


So, if you want to improve your POTS symptoms, exercising is something you should seriously consider.


Starting to Exercise With POTS


Exercising with POTS is not easy, especially when just starting out. Everyone is going to begin at a different point, and everyone will progress through their exercise program at different rates. 


Some people with POTS are bedridden before starting an exercise program. They 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 sessions on a rower or recumbent bike a week. Some people may have been trying to increase their exercise endurance for a while on their own and can tolerate other upright exercises. 


Everyone’s POTS case is different, so everyone’s exercise prescription will be a direct reflection of that. 


That being said, I highly recommend seeing an exercise physiologist or physical therapist knowledgeable of POTS. They can assist you in starting your exercise program. Many doctors (like mine at Cleveland Clinic) will set you up with an exercise physiologist and/or a cardiac rehab program so you can be monitored closely. They will also guide you on how to best progress with exercise based on your current capabilities. 


I went to cardiac rehab to learn how to exercise with POTS but ultimately stopped going because it was too expensive for me. Regardless, it was an excellent learning tool for just starting out. I took everything I learned there and applied it to my workouts completed at the gym or at home.

Biking for exercise with POTS Syndrome


The Levine/CHOP Protocols for Exercising With POTS


If you couldn’t tell by the name, Benjamin Levine pioneered the Levine Protocol himself. He created this exercise program specifically for POTS patients.


What’s really great about the Levine Protocol (and the CHOP/Dallas Modified Program) is that they truly are step-by-step guides. 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. 


You can download a copy of the CHOP/Dallas Modified Program online. Read through it to familiarize yourself with its components. You should take a copy to discuss with your doctor, so you can get guidance with starting an exercise program. 


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 those either bedridden or severely exercise intolerant. Your doctor will suggest the best starting point for you, and they can download a PDF copy of the protocol online.


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 gives you formulas for finding your target heart rate zones for different levels of exercise intensity, or “paces.” They 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. 


2. For each session, you’re explicitly told what modes of exercise training to perform. This is a mix between cardio workouts (either recumbent, upright, or a mix of both) and strength training workouts. 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 emphasize lower body and core strengthening. Strengthening these muscles will improve their ability to pump blood, thus helping to reduce blood pooling. 


3. The Levine Protocol also tells you the amount of time you should be exercising per session, 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 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’ll go for a short walk at a comfortable pace.


5. The Levine Protocol also allows for flexibility in your exercise scheduling. If you can’t complete all the exercise sessions for a week (illness, traveling, etc.), or miss more than two cardio sessions for a week, then you need to repeat that week. Alternatively, 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!


My Experience Exercising With the Levine Protocol

Levine Protocol for exercising with POTS


By the time I received my POTS diagnosis, I had already been exercising for a while, trying to better condition my body. 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 again and remembered that some people may begin in different places depending on their level of fitness. I guess I underestimated my stamina! 


I realized that getting my heart rate in the target range for the designated duration, without feeling severe rebound symptoms for 24-48 hours after my workouts, is the most important thing. 


So, I returned to my trusty upright bike. While I pedaled away, I kept a very close eye on my heart rate using my Fitbit Ionic GPS Smart Watch. If my pulse exceeded the target range, I slowed down. If my pulse hovered too low, I either added more resistance or pedaled faster. 


I highly recommend purchasing a heart rate monitor if you can, not just for exercising, but also for everyday use. For years, I’ve used FitBit watches, and they’ve worked great for me! I like how I can track other things besides exercise and heart rate, like my sleep quality, female health, and daily steps. 


I also use a Polar H10 Heart Rate Sensor chest strap for running now as well because Cleveland Clinic recommends it. Personally, I love using both a watch for everyday use, plus the chest strap for exercise where my heart rate is more vulnerable to spiking {aka, running). With both options, I can monitor my heart rate with the highest accuracy and not push myself too hard.


As far as following the Levine Protocol goes, I shift around what days I complete what workouts. Usually, I take 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 quick core work.  


I definitely am taking the program at my own pace. 


I progressed to tolerating upright exercise on schedule with the protocol, but now I’m taking a little longer to progress through the last two months. This is because I started with walking and slow jogging intervals once I was okay to incorporate upright exercise. I have to wait for my joints and muscles to adapt to the impact, so I can’t just jump into 45 minutes of walking/running too eagerly. 


I’m progressing slowly, but I am progressing, and I am getting better. 


I progress by listening to my body, as I said before. If I become severely symptomatic 24-48 hours after walking/jogging (or any exercise), then I know I did too much, and I need to scale back. Keep this in mind throughout your own exercise journey!


How Exercise Has Been a Game-changer For Me


While I did feel more fatigued when I began exercising seriously, 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. 


I have 6 months of dedication to exercise to thank for that. It really does work. 


I’m able to run again (not well, as I’ve mentioned almost too much on this blog already–LOL), and I can spend more time on my feet without tiring. I’m hoping I’ll be able to take Zumba or other dance classes again soon, but for now, I’m focusing on increasing my running endurance. 


This past week, I ran a mile in 9’40”, and my average heart rate was only 151 bpm! I’ve come a long way from 170+ bpm within one minute of jogging. My goal is to run in a 5k again this coming summer. The last time I ran a 5k was before my POTS hit me hard, almost 4 years ago…

exercising with POTS


Exercising With POTS: Perseverance is key!


According to Dr. Levine, exercising can make your symptoms worsen when you first start increasing your activity levels. This is particularly so if you’ve been bedridden or haven’t been able to tolerate much physical activity. 


That being said, there’s a good chance you’ll experience some discomfort with exercising at first. I was definitely more fatigued than usual in the first 2-3 months, and it was discouraging until I learned that feeling that way is NORMAL. 


Stick with exercise as best as you can (within reason!). Your body will adapt to the increase in activity and grow stronger day by day, workout by workout, and beat by beat. 


Remember, POTSies, exercise tolerance doesn’t come overnight. Not even a noticeable improvement comes overnight. But don’t let that extinguish your motivation. 


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. Let me repeat. It. Takes. Time. You have to be patient with yourself, and above all, remain consistent, persistent, and disciplined with your exercise regime. 


Maybe you’re not training for the Olympic Games, but you’re training for your life. For your health and happiness. For a better version of yourself. That’s your gold medal. And guess what? No one is competing against you but yourself. 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! I know you CAN do this! It will not be easy, and there will be days when you want to quit, but you won’t. You won’t because you are already so strong from enduring a chronic illness, and you can channel that same strength into sticking to your exercise program. I’ll be cheering for you the whole way. 


Want to know more lifestyle changes that can help improve your POTS symptoms? Check out how increasing your salt intake, drinking more water, and wearing compression garments can help. 


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6 thoughts on “The Levine Protocol For Exercising With POTS

  1. Hi Laurie,

    This blog is awesome — so glad I discovered it. I was diagnosed about 2 months ago and am now actively looking for some help with rehab. Have you had any experience with PT/rehab facilities in NYC? I’ve been calling around and most people seem to have never heard of POTS.

    Thanks,
    Mike

    1. Hi, Michael! Thank you so much for reading! I’m glad you found my blog to be helpful. 🙂 I have not had any experience with PT facilities in NYC, but I definitely encourage you to work with someone while you are just starting to exercise with POTS. I know how frustrating it is to try and find people that know of POTS–I feel like I am always explaining it to people! My best advice would be to print out the Levine Protocol pdf available online and to take that to whatever PT/exercise physiologist you end up seeing. Even if they aren’t familiar with POTS, they should be able to use it as a guide to help you exercise. Best of luck to you!

  2. This is so interesting!! I am about to begin this protocol. What I don’t understand though is the finding that POTS patients have “low levels of fitness.” Some teens are quite fit when they are struck down by POTS. My symptoms began when I was a nationally ranked tennis player at age 16. I didn’t know I had POTS, and I battled through it. Now, at 54, I’m disabled. So I definitely have a lower level of fitness now, but I didn’t then. But thank you for posting this! I’m hoping it works!

  3. Hi Kim and Laurie, I’m also fit and thought it was hilarious that Dr Levine thinks POTS patients are primarily deconditioned (I read his academic paper). It seems that many POTS patients are very fit before they get POTS (I swam five times a week, walked miles, and did yoga until POTS stopped me) — and honestly, I’m still fit and have strong leg muscles, but now I get horrible post-exertional malaise after exercise. Like you. Laurie, when I do recumbent exercise I cannot get my heart rate up, as I am already fit. I can see that people who have been lying down for three months or more would be unfit, but that’s not me. That said, I love the idea of progressively more challenging exercise. When I exercise at the heart rate prescribed by Levine, then I get PEM. How did you manage the PEM?

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