Everything POTS, Lifestyle

The Levine Protocol For Exercising With POTS

the Levine Protocol

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.


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


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.

Running a 5k With POTS


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. 


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. 


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.  


XO,

Laurie

the levine protocol for POTS


Tagged , , , , , , , , , ,

22 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?

    1. Im in the same boat. I used to be quite fit. I played soccer tuesday nights after work, roller skated every weekend, had a horse – then I started getting really severe, cascading problems that ended up with me on disablity. I developed sinus tachycardia. Plus of course POTS and all the other stuff. I’m now quite overweight. But the weight is secondary to severe exertional malaise – so bad that my body just shuts down, slurring words, muscle weakness, then spontaneously falling asleep. POTS is not my biggest concern. Those crashes are. When I try to exercise, sometimes bad things happen (like inability to walk bad). I mostly do gentle p/t in the pool now. I would love to be more fit, but honestly, I’m a bit scared to be jumping into a program that requires biking for 45 minutes. Just 6 minutes on a treadmill at the lowest speed and my HR is heading north of 135.

      1. Hi Jennifer—just want to make sure you’ve had a doctor check you for chronic fatigue syndrome? PEM is one of the primary symptoms and I’m not sure how well known that is outside of CFS circles!

      2. Jennifer, I recommend you ignore the 45 minutes and forget about standing exercise for a while. At the Dysautonomia International Meeting last year a lot of the POTS rehab doctors said they thought the Levine Protocol was too demanding at the start. They recommend starting on the recumbent bike at whatever level you can manage. For me that was 4 minutes without any resistance, bike not even turned on. I am in month 2 now and it has taken me a couple months to get here. I’ve reached the point where I am now able to use the Levine protocol pretty much sticking to their schedule. If a given day is particularly difficult I repeat it before moving on. The most remarkable thing is, although I am tired, I am also starting to feel really good after the exercise. I still have trouble on my feet -just functioning in a kitchen is still hard, let alone a treadmill or actual walk, but I’m am trusting that that will come with time.

  4. I am 41 year old guy here. Pretty active and fit. ICU nurse so I’m used to being on my feet all day. I was just diagnosed with post Covid POTS. It’s been about a month worth of symptoms. High heart rate dizziness etc… I was lucky I read a lot because I knew what this was when the symptoms hit and my diagnosis was confirmed by MD a few days ago. I am just wanting to be normal like i was 6 weeks ago. This condition is so debilitating. I want you to know I found so much encouragement and strength in your words and your experience I wanted to say THANK YOU from the bottom of my heart. It’s people like you that are world changers and give people like me hope. THIS IS NOW MY GOLD MEDAL JOURNEY!

    1. Hi Vincent! Thank you for reading and for your kind words! I’m sorry to hear you haven’t been feeling well; I know this condition is tough to live with. Wishing you all the best on your journey!

    2. Hi Vincent..I m having the same problem..Have you recovered from that post covid pots…I m suffering from this for the past 1 week

    3. Hi I stumbled across this website and started reading comments… just wondering how you feel now??? Any better since your diagnosis??

  5. Hi Lauri, This was very helpful. I was diagnosed with both POTS and Ehlers-DanLos syndrome in 2012. I have been seeing a neurologist for my POTs , but haven’t received any support or instructions on how to move forward, just meds. I learned a lot from just this post. I was deconditioned, then worked my way up to functioning better, then the pandemic hit, I filed for divorce and moved to a one bedroom apartment. For long periods of time, I wasn’t able to access certain equipment and didn’t get the kind of exercise I had been used to. Also, thousands of less steps in isolation. So, I have become very deconditioned again, despite walking daily, light weights, PT at home, YouTube exercise. I didn’t know about the heart rate targets….I plan to get myself a Fitbit or some type of tracker and start working on the protocol. The EDS makes it very hard. Yesterday, my back went out, I’m wearing a back support, wrist support, knee support and having some dizziness. This is so frustrating when I need and want to move and feel better. I have signed up for the email. Thanks for you inspiration.
    Julie C

    1. Hi Julie! Thank you so much for reading and for sharing your story. I understand your frustration. On days when I am similarly frustrated with my health, I tell myself to just take everything one day at a time, and I try to focus on one thing I can do that day to help myself. Sometimes that’s taking a step back and resting until I’m well enough to try again. You are doing the best you can — try not to be too hard on yourself. Sending you well wishes for better days ahead, and I hope your back feels better soon! 🙂

  6. Hi Laurie,
    I’m wondering if you know the rationale for the extra week in Month 2 of the CHOP/Dallas Modified Program. It’s the only month where 5 weeks of exercise are given, and the 2nd week’s protocol looks out of place (it’s easier than week 1, and then week 3 seems to pick up where week 1 left off). I wasn’t sure if it was built in as recovery, or if it might be an error? Thanks for any insight you can offer.

    1. Great question, Kate! I do not know why there is an extra week in Month 2. I would assume you’re supposed to treat it like the next week in the plan, even though it messes up the month-long schedule. I believe week 2 is easier because it’s allowing time for recovery, but I can’t say for sure. I know running plans I’ve looked at often build in recovery weeks here and there with easier workouts/shorter mileage. Perhaps this is similar?

  7. I’m so glad I found this post. I don’t have a formal diagnosis yet but the doctor is pretty sure that is what I have and I am waiting for some tests before a diagnosis. I am encouraged by this post. I have been really discouraged lately because I feel like I’ll never be able to do the things I did before but this has given me hope. Thank you

  8. Hi Laurie,
    Just out of curiosity you mentioned your neurologist is at Cleveland Clinic. Do you happen to see Dr. Wilson? He was absolutely phenomenal for me in my pots journey and I was lucky to have him early on. A doctor who truly listens is a game changer. Thank you for sharing your experience. When I was first diagnosed years ago there was limited information, especially from others experiencing it. It’s so important to hear a personal account. Keep up the awesome work!

  9. Hi Laurie!

    I just wanted to write to thank you for sharing your experience treating your POTS. I’ve yet to be diagnosed but I’m absolutely positive that the symptoms I’m experiencing are POTS related (50+ bpm on standing doesn’t seem normal to me lol). It feels like a **LOT** to deal with sometimes and it can be quite lonely trying to muddle my way through when the people in my life don’t fully understand how debilitating it is.

    Being able to read about your struggle and your improvement is giving me more hope for the future. Here’s to kicking POTS in the behind!

  10. Congratulations on your 5k! This is very encouraging to read. Thank you for posting this helpful info! – Andrea

Leave a Reply

Your email address will not be published. Required fields are marked *