Disclaimer: These posts are speaking from my personal experience and I’m trying to outline what has worked for me. I know everyone’s cases are different, so I want to respect that, and say up front that I know my methods my not work for others. By no means am I looking to push my experience as the only way that can work for people, nor am I trying to say that anyone is wrong or weak for not pushing through! I have tremendous respect for everyone fighting through POTS, and I am only looking to inject some more strength, resilience, knowledge, and positivity into an already incredible community. I’m also just looking to share my story and connect with others. So, thank you for reading today, and know that you are amazing, and I wish you the best on your personal journey!
In my last post (click on these links for more information about them), I talked about how meditation has had incredible benefits for my mind, body, and spirit, and how it has had a profound positive impact on my health and well-being. Despite all of those benefits, I do not believe my meditation practice has had the most significant impact on me in the last two years. That distinction belongs to exercise.
From shortly after the time I was diagnosed with POTS up until today, I have had a consistent exercise routine of some form. Exercise brings me a dopamine rush and gives me a great bodily feeling. It gives me unbeatable confidence in myself as I continue to better myself through how I feel and how I look, and it’s a motivator that helps me blow past my goals. Exercise is a constant rock in my life. I know I can always go to the gym, almost no matter how I am feeling, and I will come out feeling great. I journal every night, and I start out with an overall “grade” or feeling of the day. If I exercised earlier that day, I am almost guaranteed to write that it was a great one — even if most of the day itself wasn’t good!
So, today I am excited to share with you something that changed the course of the way I lived. I am going to give a comprehensive review and how-to with regards to the Levine Protocol, which is an exercise program designed specifically for those with POTS. I’ve gone through the entire Levine Protocol and I can assure you from experience that it works. How do I know? In late 2015, I was struggling to make it through a session on the exercise bike, and I would get dizzy when I stood up and walked around. 2 years later, I was competing for the top men’s club rowing team in the country at the University of Michigan, symptom-free after grueling hour-long workouts. Let me tell you how exercise and the Levine Protocol can change your life.
I was the third person in my family diagnosed with POTS. From watching my brother and sister go through it before me, I knew consistent exercise was an essential step on the road to getting better. I was interested in specifics on how I could improve my health and happiness, and I always loved scientific research. My parents introduced me to a study done by Dr. Benjamin Levine, a cardiologist in Dallas, Texas. The study, titled “Exercise in the Postural Orthostatic Tachycardia Syndrome” stated there are currently no proven drug-based treatments for POTS, but physical training has been shown to increase exercise performance and decrease tachycardia in POTSies. On a deeper level,
“Short-term (i.e., 3 months) exercise training increases cardiac size and mass, blood volume, and VO2 peak in POTS patients. Exercise performance is improved after training. Specifically, stroke volume is greater and heart rate is lower at any given VO2 during exercise after training versus before training. Heart rate recovery from peak exercise is significantly faster after training, indicating an improvement in autonomic circulatory control. These results suggest that patients with POTS have no intrinsic abnormality of heart rate regulation during exercise. The tachycardia in POTS is due to a reduced stroke volume. Cardiac remodeling and blood volume expansion associated with exercise training increase physical fitness and improve exercise performance in these patients.”
Basically, this study says that exercise can help all parts of your heart function and autonomic regulation and that it is possible for people with POTS to exercise and condition themselves over time.
Dr. Levine didn’t want to just prove that exercise is an effective treatment for POTS. He decided to develop an exercise program specifically for POTS patients that had research-backed benefits. The program he developed, called the Levine Protocol, is a combination of recumbent cardio days and weight training days. Every week, you increase the difficulty of the workout slightly, through slightly longer exercise session or a higher resistance level. After only 4 months following the program, you are expected to start using a treadmill or elliptical for your exercise. As someone who followed the entire protocol, I can tell you it was extremely rewarding to power through the first four months and work my way up to running. Even though you may not think it is possible, it really is, and you just have to believe and keep pushing through!
Dysautonomia International has a full guide on their website to the Levine Protocol, with a calendar that outlines the full 8-month program and a specific exercise plan. Specific stretches are also featured in the plan. It is available here, and I highly recommend you download and read through it. You can even print it out and give it a shot! I’m going to talk about some of the key points in the Protocol, tell you what changes I recommend, and also relate it to my exercise experience over the last two years.
First off, in terms of setting yourself up for success with this program, you’ll have to do a bit of work before you even start in the gym. The program talks about getting committed and getting your family to read through the program before you start. This is an essential step — it will be much easier for you to be disciplined and follow your plan when you have positive support and understanding from your family. For example, if you are really not feeling a workout one day, a family member can give you that extra push that you need to get to the gym. Actually going to a gym is a huge part too. If you can join a gym, you’ll have easy access to all the equipment you’ll need for your program. The other benefit, which might be even better, is the motivation you get from people around you. When you are in an environment where everyone else is working hard and pushing through, you’ll be motivated to finish that set and push through the pain! Making friends with trainers or other people at the gym can also help, as they can help you when you don’t know how to do an exercise, and then also provide you with motivation and support. Find a gym take that next step to integrate yourself into a community!
On the topic of the program itself: If you’ve looked at the schedule for the Levine Protocol, you’ll notice that it has you working out Monday-Friday and then taking Saturday and Sunday off. The most important thing is to make sure you get your five days a week in, no matter what days you’re doing each exercise. The program even mentions that you can combine your strength days with two cardio days, and if you really need to, that is okay to do. However, exercise is one of the most important components of getting back to full health with POTS, and it should be a priority before most other things in your life. Additionally, especially when just starting out, it is often too much on your body to do two modes of training in one day. Spread it out!
My personal recommendation is to do cardio on Monday, strength training on Tuesday, cardio on Wednesday, off on Thursday, strength training on Friday, cardio on Saturday, and off on Sunday. This way, your schedule is much more balanced. Your body gets much-deserved rest days on Thursday and Sunday to recover from a few days of exercise. Additionally, if you take Saturday and Sunday off, you may get a bit deconditioned and struggle in your cardio workout on Monday. I am all about moderation and balance with POTS, especially with exercise, and I think splitting up your workout blocks with rest days in between is the best way to go about it. But, as I’ve said before, whatever works for you is the best way for sure! Keeping on schedule and just showing up for the workouts is absolutely the most important step in establishing a consistent exercise routine.
Looking at the cardio component, I recommend trying out the rowing machine if you can. Most gyms will have a rower and having rowed for the first time this past fall myself, I can tell you rowing is a fantastic workout for your legs and core. A how-to link is listed on the Levine Protocol document, but I think this video also does a great job explaining — it’s from a 5-time Olympian! On the other hand, using the exercise bike was my preference when starting on Levine, and the bike is definitely a great way to build up your stamina and leg muscles. Some people think an added bonus is that you can bike while watching your favorite show on TV or your phone. That may work for certain people, but I always noticed I was not keeping up with my target heart rate when I was paying too much attention to something on the TV in front of me. So, from personal experience, I recommend putting on some of your favorite songs or some pump-up music and giving that quick cardio session all of your focus. After you’re done, you can always treat yourself with an episode of that show!
One thing that’s not on the Levine Protocol is a movement or mobility practice. The warm-up they prescribe definitely helps prepare the muscles for a workout, but there is no focus on preparing the muscles and joints to move properly. I currently have a movement practice I perform daily, and I like to spend 10-15 minutes before every one of my workouts doing some mobility drills to warm my muscles up, set my joints in the right positions, and increase my range of motion.
There is an abundance of mobility drills out there, but a few that I think are most essential are the thoracic bridge, the cat-camel stretch, and the downward facing dog. All three of these movements activate the core in some way and help to stretch the upper and lower body.
If you want to learn from the world’s foremost expert on mobility, check out Kelly Starrett and his website mobilitywod.com for resources and tutorials on mobility and massage sequences. Here are six drills he recommends doing daily. Another resource I like to use is the YouTube channel of Luka Hocevar, a strength and performance coach based in Seattle, WA. He has all sorts of mobility exercises you can use for specific parts of your body that may be tight or sore, and you can pick and choose what you want to use. Using any of his movements for a warm-up or a daily mobility practice can make a definite impact on your body function.
A different part of functional movement and overall physical health lies in your the health of your muscles, otherwise known as soft tissue. The best way to repair soft tissues is through foam rolling or self-myofascial release, which can be done with a foam roller or lacrosse ball. I won’t get too far into the details on this one, as there is a lot to cover and this article does a fantastic job explaining how the science and how-to. I use a lacrosse ball on my deltoids (big muscle below you back shoulder blades), pectorals (your chest), hip flexors (right below your hips on the side of your body) and under the arch on my foot on a daily basis. This video gives a visual of all of those areas, as well as a tutorial on using the lacrosse ball for massage. I can tell you one of my biggest pain points has always been in the tightness of my muscles, but foam rolling and lacrosse ball massages have made a tremendous difference in how my muscles feel and perform.
You’ll notice I just placed a lot of emphasis on mobility, but for those with Ehlers-Danlos Syndrome or Thoracic Outlet Syndrome (which I have a form of), maintaining proper body movement and function is essential to better exercise performance as well as injury and pain prevention in everyday life. So many people with POTS have other stuff going on too, and taking care of your body through mobility and massage will make you feel better overall — I guarantee it.
We just discussed preparation, cardio, and mobility, so now we can talk about my favorite part of exercise — strength training!
The exercises suggested by the Levine Protocol are the seated leg press, leg curl, leg extension, calf raise, chest press, and seated row. They all involve some sort of lifting, and lifting for POTSies keeps your heart healthy and your legs strong! Let’s check out the exercises in the program.
The seated leg press works your quadriceps, your butt, your thighs, and leg stabilizers, and is a great way for beginners to build leg strength without much pressure on the back or spine. If laying down with your feet above you while performing the leg press makes you symptomatic, a great alternative to try is the hack squat, which can be found in most gyms.
The leg curl works the hamstrings in isolation but has some issues that are detailed here. It’s not the worst thing to do in the world, but there are definitely healthier alternatives. The bridges exercise shown in the Levine Protocol is an overall better exercise, and you can find even more alternatives online if you want to keep exploring.
The leg extension is the one exercise I highly recommend you don’t do. It can reduce muscle activity, increase the chance of a torn ACL, and reduce functional movement in the legs. Here’s the science. The good news is, there are some great alternatives: Bulgarian split squats and then bodyweight lunges and squats. The latter two are tougher for people with POTS because they’re standing exercises, but they are definitely possible to build up to. Also, Bulgarian split squats are difficult to start with, but don’t get discouraged. You can always do 3 sets of 1 rep, 3×3 reps, or 3×5 reps, building your way up to a 3×8 or 3×10.
I have no problem with calf raises, chest press, or seated rows; in fact, these are all exercises I perform in my current routine. The last two are great for building the upper body!
If you deal with tightness in your neck, back, or shoulders, or a forward tilted head posture, you can also add face pulls into your routine. These are more difficult than the other exercises but are great for opening up the upper back and getting your shoulders back into position. You can also perform them kneeling if standing makes you symptomatic.
For the abs component of the program, I disagree with the program’s suggestion of sit-ups and back extensions — here’s an article from Harvard Medical School on why planks are the new best way to work the core. This is a how-to on planks if you’re not familiar. Another exercise mentioned in that previous article is the bird-dog, which works the abs and the back. If you can stick to bird dogs and planks, and build up core strength to be able to do a side plank, I think that’s more than enough.
Here are other exercises to work the core if you’re looking for variety or easier exercises than a plank. As to the recommendation for pilates, I’ve done pilates once in my life and I felt great after the session. I’ve only heard great things about pilates and recommend you give a class with a certified trainer a try if you want.
Mayo says in their program you should record the weights that you lift, and I am a big fan of keeping track of your progress. Not only will you know how much you’ll be able to lift every time you come into the gym, it’s also motivating to see you make progress with your weight over time. Here’s a template I made for the program, and you can use this to track your progress over time. If you’re going to use this template, please make a copy of it first by going to File -> Make a Copy. If one person edits the original, it will result in no one else being able to use the blank template, so it’s very important to make that copy!
For anyone who feels they are past the Levine protocol or want a higher-level lifting program to start, this program is the beginner program I used when I wanted to move on from Levine. It is a great full-body program for both strength and aesthetics, and I recommend everyone take a look at the introduction of the post for valuable information about the basics of strength training. When I was on this program, I would go three days on, one day off, and would do about twenty minutes on the treadmill to start out every day. I ended up spending over 2 hours at the gym for all of these workouts, and have since realized I don’t need to spend all that time to get good results. However, I know the time I invested in my workouts immediately after my visit to the Mayo Clinic was crucial to my success in getting back to school, activities, and living healthily and happily again. It was definitely all worth it.
To put my journey with exercise in perspective, I am only 3 years removed from completing the Levine Protocol and exercise is one of the cornerstones of my life right now. I recently deadlifted 435 lbs, which puts me in the top 5% of people in the world for that exercise, and I’ve been able to build up to that in only about 30 months of training. My most satisfying experience with exercise has definitely been when I tried out for and made the Rowing team in the country this past fall at Michigan. To have done that after my heart wasn’t strong enough to support me doing any exercise at all a few years back proved to me anything is possible. I’ve weathered the storm and come out much stronger through exercise, and I know you can too.
I definitely struggled to complete sessions from the Levine Protocol, but it is true that if you just keep pushing and try and progress a little bit each day, what you can accomplish in weeks, months, and years is unthinkable. As former US Army General Creighton Abrams said, “When eating an elephant, take one bite at a time.”
The Levine Protocol recommends taping your goals to your bathroom mirror and reading them every day. I say do that, and then also tell your friends and family that you are going to use exercise to change your life. The commitment and motivation you will draw from yourself and their support will be enough to carry you through the tough days. It may not always be easy, but living with POTS is hard enough on its own. If you can do that, I know you have the power to change your life through exercise. Just think about how much better you’ll feel and look, how much confidence you’ll have gained, and how much more motivated you’ll be to chase other goals in the future after you’ve been killing it at the gym!
Best of luck, and reach out to me if you have any questions at all about the program, my exercise routine, or anything else mentioned in this post. I would also love to hear your exercise story and support you on your journey! I’ll let Venus Williams have the last word. “Just believe in yourself. Even if you don’t, pretend that you do, and at some point, you will.”
Thank you so much for your reading and support! If you want to be a superhero and spread the word about this blog, please share this post with your friends, family, and on your social media channels! You never know who you can help! Please let me know in the comments section what you think of this post, if you have any questions, and if there is anything you would like me to talk about in the future. I would also love to hear from you personally in the “Contact Me” section above. Thank you again and let’s keep building a community of positivity around POTS!