The modified Levine protocol is a modified version of the exercise program that Dr. Benjamin Levine created for POTS patients. To obtain his original program, your doctor must request it from him directly. The Children’s Hospital of Philadelphia modified the program so that it is easy to follow and accessible to everyone through the internet.
Dr. Levine is a cardiologist that worked with NASA. He noticed that astronauts were returning from space with orthostatic intolerance. He developed a training regimen for the astronauts to complete while in space and then would treat them with a saline infusion when they returned to earth. This treatment helped the astronauts and it got him thinking that such an exercise regimen may be helpful for POTS patients too.
To paraphrase my neurologist about the Levine protocol “It is not a cure. It may help some patients, particularly those with mild POTS and those who were athletic prior to POTS.” Because I am a former athlete with mild POTS (doesn’t feel mild to me, but technically it is true), she recommended I give it a try.
Why I decided to do the modified Levine protocol
I have been exercising regularly for over a year now, but it has been more strength training-oriented than cardio-oriented. I have struggled to do cardio because I was trying all upright methods. After about 10-15 minutes I would be wiped out and I was never able to progress past that point. It makes sense that I could possibly improve some POTS symptoms by virtue of improving my cardiovascular efficiency. I can do recumbent cardio exercise much longer than upright cardio exercise, so I can achieve more cardiovascular benefits from recumbent cardio at this point.
Even though exercise is beneficial I want to emphasize again that it is not a cure. If deconditioning or lack of exercise caused POTS, then I and the many athletic people that have POTS wouldn’t have gotten it in the first place. However, being the most healthy and fit versions of ourselves is always going to improve our lives with chronic illness. You can check out my Exercise and POTS post to read more about the science and benefits of exercise for POTS.
What the program is like
The protocol is mostly 6 days a week of exercise that begins recumbent and progresses over the span of several months to upright exercise. The amount of time of exercise increases gradually as well. There are 2 or 3 days a week of strength training and 3 or 4 days a week of cardio exercise. I like to alternate cardio and strength training days because it lets my muscles recover properly. The program comes in a calendar. I printed it out so I can cross out every day I complete. I have always enjoyed doing that with training programs, it enhances the sense of accomplishment. Or if it was a bad workout, you can scribble that day to oblivion, whatever floats your boat.
This program is aggressive and challenging. If you are bed ridden or severely disabled I do not think you would be able to start where the program does. Instead, I would recommend starting off with a PT to work up to the level of fitness the program starts at. I barely made it through the first few sessions. My vision while doing the “base pace” is pre-syncopal so there is some white tunnel vision and white halos on everything. It’s slightly disconcerting, but I feel confident enough in my ability to stay safe. If I were newer to the POTS game, I would feel more comfortable doing the program under the supervision of a medical professional, at least in the beginning.
What to expect
The program states that it takes a few months to notice the benefits of it in your daily life. I think it is good to know this to set proper expectations and to not give up too soon. I have had some days where the biking has made me more fatigued in my daily life. You may expect to experience some extra fatigue in the beginning as well.
A note if you have ME
Be VERY careful with exercise if you have ME. Those of us with it differ greatly in how our bodies react and what our crashes will be like. Some people with ME could end up bed ridden for a month or more if they tried to complete day 1 of this protocol. Some ME doctors even recommend not exercising at all until you improve up to a certain level of functionality. So, use your best judgment on your limits because your ME may be different than mine.
Equipment needed
I live in a very rural area so going to the gym is not an option. If you have access to a gym, that would be the easiest and most cost-effective way to do the program. If you live in Mayberry like me, then keep reading.
You don’t need any equipment to do the strength training depending on your preferences. There are plenty of body weight exercises that would suffice. The program gives several ideas of this. I do P.volve on the strength training days which uses a variety of equipment, but you can certainly keep it more minimal and reap strength training benefits.
To do cardio, you need to start with a piece of recumbent equipment (a bike or rower) or swim. I use this recumbent bike. As you progress, you move to an upright bike. I’m going to just skip that mode of training because it’s only used for one month of the program and it’s silly for me to buy an upright bike to use for one month. After that, you can walk or elliptical for upright cardio. Some people can progress to jogging near the end of the program. I can’t fathom running ever again, but in the words of Justin Bieber “Never say never”.
You will need a heart rate monitor to make sure you are exercising in the proper “zone”. You don’t need anything fancy, but you do want it to be accurate. I use and recommend the most basic Polar model.
Month 1 update
I’ve completed Month 1 of the modified Levine protocol! I got a cold, a stomach virus, and a sinus infection all within this month. Luckily, none were severe on any workout days, so I didn’t have to skip any workouts.
This program is no joke. My body is improving in its cardiovascular capabilities. I am stunned by how much more exercise I can tolerate. Prior to the modified Levine protocol I would get wiped out after 10 minutes of cardio. During the last session of the month, I biked for 25 minutes with half of that being at “base pace”, which is pretty fast. The “base pase” means keeping your heart rate between 125-145 and this felt like a sprint during the first two weeks. The last session I did felt like I hit a rhythm like I used to when I would run. I feel good about continuing with this program. These physiological changes haven’t translated to improving my daily life with POTS and ME yet, but I think they will down the road.
The strength training with P.volve this month has been going fine. I’ve been making sure I take it a little easier with it so that I can recover from the biking sessions. I have also been doing at least one mat-only workout per week to help with recovery.
Looking ahead
Looking forward to month 2, the time of biking bumps up significantly. I may have to repeat some weeks or adapt the increments of progression, but that isn’t a problem. I did two extra sessions of the training load that was in week 1 before moving on and I am glad I did that, I feel like it gave me a better base. So, don’t be afraid to modify the protocol to your own needs.
Other posts about the Modified Levine Protocol
Modified Levine Protocol Month 2
Modified Levine Protocol- Bonus Time
Modified Levine Protocol Month 3
Modified Levine Protocol Month 4
Modified Levine Protocol Month 5
Modified Levine Protocol Month 6
Modified Levine Protocol Month 7
Modified Levine Protocol Month 8 and Final Thoughts
Have you tried the Levine protocol or modified Levine protocol? What types of exercise work best for you?
Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.
Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.
19 Comments
How much salt does Dr. Levine’s protocol calls for?
The modified version that I used does not have any recommendations for salt intake.
This is great information. Out daughter suffers from POT&ME and we are always so accepting of any article she shares with us. We feel helpless at times, but get encouraged with positive articles as this.
Thank you again!
Hi Patty! You’re welcome :). I wish your daughter the best!
When did incorporate walking? I just got diagnosed with POTS, I feel like can do some walking but I am note sure… The protocol says to begin walking in month 2, but I would like to feel more free, that is moving from point A to B…
I started doing upright cardio and walking in the 3rd month. If you feel confident doing it already, in my layperson opinion, go for it! Upright training is the ultimate goal, so if you can do it, might as well continue to move forwards. In retrospect, I would have been better served to be less rigid in the program and listened to my body more (both when things were too little or too much). I hope you have good success with the protocol :).
It’s a wonder to me how someone can be so physically fit and yet be so sick at the same time. That’s what people need to understand about these “invisible illnesses” such as POTS and other autoimmune diseases. I know this Levine Protocol has been an uphill battle and there are days it’s all you can do to exercise. And yet you muddle through knowing it will help you in the long run. Congratulations on the halfway mark! May your body gain health and stamina as it gains muscle.
Yes, exactly right. It is also nonlinear, which most would not see. One day, those of us in this subset can exercise. The next day, we may be crawling to get around. It varies from person to person with how exaggerated this effect is. Exercise improves and worsens things all at the same time, but in the long run seems to help more than it hurts (again, depending on the subset of POTS and ME). Thanks!
Congratulations on your progress! That’s rather amazing 🙂
Thank you!