If you have been keeping up with the blog, you know that I have been doing the Modified Levine Protocol for the last few months. I had surgery on November 15th and wasn’t able to exercise for two and a half weeks. I was also sick during that recovery period, so I was quite sedentary. When I began exercising again I did a “trial” on the recumbent bike to gauge my fitness. I was able to only do 8 minutes at base pace (heart rate between 125-145 bpm). So, I decided to start from there, listen to my body, and increase as I saw fit. I could have jumped back into the Modified Levine Protocol somewhere during the first month, but I found that doing a “bonus time” was less demoralizing about the fitness that I lost.

Where I am at now

I am happy to say after 4 weeks that I am back to the fitness level I was at prior to surgery. I will begin month 3 of the Modified Levine Protocol next.

How I progressed back to fitness

I started back up with 20-30 minute P.volve sessions three days per week again once I was clear to exercise. I was able to jump back into that as normal because it is pretty low-key. Here is what my progression looked like on the bike:

• 10 minute warm-up, 8 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 10 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 12 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 13 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 15 minutes at base pace, 10 minute cool down (I started feeling a groove at this point)
• 10 minute warm-up, 18 minutes at base pace, 10 minute cool down
• 20 minutes easy (sick with a virus)
• 20 minutes easy (sick with a virus)
• 10 minute warm-up, 20 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 23 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 28 minutes at base pace, 10 minute cool down
• 10 minute warm-up, 30 minutes at base pace, 10 minute cool down

How have I been feeling?

I was nearly back to baseline of where I was before I began all this sickness nonsense, but I just came down with another sinus infection two days ago and it is kicking my butt. I am hoping that it doesn’t sideline me for too long so I can jump into month 3 of the protocol sometime this week.

I still feel like I haven’t been healthy for long enough to properly assess how the protocol is working for me. The longest stretch I have gone without being sick since the beginning of October is two weeks. It’s been pretty ridiculous. The protocol is definitely beneficial mentally. I feel like I’m working hard for my health and I have always loved training. There is no doubt that the protocol is improving my cardiac fitness, so I hope in the near future to see that translate to real-life functionality.

What is next?

Month 3 of the program is up next. It is mostly a plateau month as most of the sessions stay at the level of 30 minutes at base pace. It will introduce a couple sessions at maximum steady state which means the heart rate is between 165-175. I am not sure how I will accomplish that high of a heart rate on a recumbent bicycle. I feel like I am sprinting to get it above 125. It is possible that I may start some upright cardio because that will increase my heart rate by 30-40 bpm just by virtue of standing up thanks to POTS.

Other posts about the Modified Levine Protocol

Introduction and Month 1 of the Modified Levine Protocol

Month 2 of the Modified Levine Protocol

Month 3 of the Modified Levine Protocol

Month 4 of the Modified Levine Protocol

Month 5 of the Modified Levine Protocol

Month 6 of the Modified Levine Protocol

Month 7 of the Modified Levine Protocol

Month 8 of the Modified Levine Protocol and Final Thoughts

Link to the Modified Levine Protocol

Modified Levine Protocol Program

Have you had to take a hiatus on the Modified Levine Protocol? How did it go for you in getting back into it?

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.

Month 2 of the Modified Levine Protocol wasn’t as dramatic as Schmidt here, but it was certainly a challenge. I have been sick the entire month with a virus and then a sinus infection, which I still have. I took some time off and then repeated some of the program per the instructions so I think this month has taken me 7 weeks to complete. In retrospect, I probably should have taken even more time off, but the athlete in me will push to exercise unless I’m completely incapacitated.

To read about my first month doing the Modified Levine Protocol and more of the basics of the program you may visit my first Modified Levine Protocol post.

What month 2 is like

Month two of the protocol is nuts. The increases are very dramatic. I would not recommend doing this month as it is written for many people, especially ME patients. In retrospect, I would have adapted the program by lengthening the month and taking longer to build up the time increments. By the end of the month you are doing a 10 minute warmup, 28 minute base pace (heart rate between 125-145 bpm which means I’m hauling), and a 10 minute cooldown. Say what?

How I feel

I have been struggling quite a bit this month and have actually had to decrease what I do in a typical day. This is probably due to the virus. Or the sinus infection. Or overdoing it. Or a fly farted 10 miles away.

I am going to continue with the program. I think I will eventually reach a point where my body catches up with the demands of the program. The instructions at the beginning of the Modified Levine Protocol say that it’s normal for it to take several months to notice any impact in your daily life. Also, with as often as I have been sick I feel like I can’t accurately gauge anything. So, I remain hopeful about the Modified Levine Protocol.

Mestinon

I started taking Mestinon almost two months ago. It is a muscle strengthener and it promotes parasympathetic nervous system activity. Per my doctor, I take the first dose before I exercise in the morning. It may be helping me get through the biking sessions. It’s really hard to tell. I feel like I can’t properly evaluate Mestinon yet because I have been constantly sick. When I can say with certainty what kind of effect Mestinon has, I will do a blog post about it.

The good news is the only side effect I have had is nausea and it was temporary. I will most likely continue to increase the dosage after I consult with my doctor next. Who knows, maybe it’ll end up being a “winner” for me. My doctor said that based on her experience I will likely not find a drug that provides a dramatic difference for me because I am able to exercise and am in more of the “mild POTS” category. So, I have reasonable expectations about it.

The positive

It truly is amazing that I can bike for almost an hour with 28 minutes of it being fast. I could barely do 3 minutes of body weight exercises last year, so this is a big change fitness-wise. I have always loved the process of being on a training program as an athlete and this is a normal activity for me to be doing. The more “normalcy” you can have in your life, the better. It’s good for morale.

Looking ahead

Month 3 looks like a plateau month, which is a huge relief. My body will probably catch up to the demands of the program with this small lull. I have surgery on Friday for something totally unrelated to POTS/ME. I will have to take some time off, but I do not know what to expect yet. So, month 3 will probably take a couple extra weeks as well, but there’s nothing wrong with that. I’ll continue checking in after I complete each month of the Modified Levine Protocol.

Other posts about the Modified Levine Protocol

Modified Levine Protocol Month 1 and Introduction

Modified Levine Protocol- Bonus Time

Month 3 of the Modified Levine Protocol

Month 4 of the Modified Levine Protocol

Month 5 of the Modified Levine Protocol

Month 6 of the Modified Levine Protocol

Month 7 of the Modified Levine Protocol

Month 8 of the Modified Levine Protocol

Link to the Modified Levine Protocol

Modified Levine Protocol Program

Is anyone else doing the Modified Levine Protocol? How is it going?

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.

If your vision has a surreal dream-like quality and is “wonky”, I highly recommend physical therapy. I had this sensation (almost like being drunk) in addition to the lightheadedness that accompanies POTS. My internist recommended that I try physical therapy for dizziness.

I had low expectations because I had already done some vestibular exercises that Mayo gave me and it didn’t help. Also, I figured whatever physical therapist I saw would most likely not even know what POTS was. I ended up being wrong and had a great experience.

Why bother with PT

A common issue that POTS patients have is dysfunction with the vestibular-ocular reflex. It is where the vestibular system tells the brain a certain picture and the eyes tell the brain a different picture. The result is vision that is confused and “wonky”. Physical therapy provides exercises that improve this reflex and result in less dizziness.

I credit PT with giving me the ability to drive again. I took one year completely off of driving because I felt it was irresponsible with how bad my dizziness was. Today I can drive for about 45 minutes at a time in low traffic areas. Mental and physical fatigue is still a hurdle with driving. However, it is still wonderful to have the independence of driving in any capacity.

With the vestibular-ocular reflex issue improved, I also feel less awkward in public. I know that sounds weird, but there’s something about having the walls swirling behind whoever is talking to you that makes you feel uncomfortable and self-conscious.

As I have mentioned in exercise posts, PT would also be very useful for initiating an exercise protocol if you are significantly disabled or even just feel uneasy about it.

What PT is like

The first visit was quite long- about an hour and a half. The physical therapist did numerous tests to evaluate what my particular weaknesses were and then developed a program based on that. I live somewhat far away from the PT office I went to, so the PT made sure I could do all the exercises on my own. We would re-evaluate every few weeks. After about 3 months I “graduated”. My dizzy/drunk vision symptoms had improved as well as the way I measured up on the tests the PT put me through. She recommended I continue to do a maintenance level of exercises. I ended PT about a year ago and I have done well to maintain the progress I made by spending just one minute each day.

What the exercises are like

This link demonstrates how to do some basic vestibular-ocular reflex exercises. I like the progression they explain at the bottom. I do not have the exact exercises that I did anymore but those in the link are similar. In addition to the exercises mentioned in the link I remember doing head movements and eye movements while balancing on a pillow or walking in a hallway. I spent between 20-30 minutes every day doing these exercises for a few months. It took a while to see progress, but I am glad I stuck with it.

On your own vs. with a PT

As I mentioned before, I did some generic exercises on my own as prescribed by Mayo and it was not as impactful as the program the physical therapist prescribed me. A PT can make things more personalized and it may make a difference. If you have dizziness issues, it doesn’t hurt to try some exercises on your own. But, if you are not seeing any improvement after a month or so, it may be worth consulting with a physical therapist.

How I maintain my progress

Every morning I spend one minute doing the vestibular-ocular reflex exercise that was most impactful for me. I keep my eyes fixed on the letter E on the center paper while I quickly move my head side to side to line up with the angles of the white papers to the side of the letter E. I move my head at a speed of about 150 movements per minute (I use a metronome to determine speed). The exercise is a doozie at first, but now it’s much easier to focus on the E.

How to find a PT

I recommend asking around to find a PT that is knowledgeable about POTS. You can ask your doctors, fellow local patients, and use google to accomplish this. If you can’t find a PT that is POTS literate, see if you can find one that has experience with vestibular ocular reflex issues. That is probably much easier to find and still relevant.

Have you done physical therapy? What has your experience been?

To see what else I do to treat POTS/ME you can visit the current treatments page.

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.

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.

The P.volve method

P.volve is a low-impact functional movement workout created by New York-based trainer Stephen Pasterino AKA “P”. It is the method I use to strength train and it is the bomb dot com. I love it because I can get stronger without “crashing”. You can learn more about the P.volve method on their website.

How I got started

In July of 2018 I was looking for a new workout method that I could do in my condition. There was no way that I could or should have gone back to my old ways of intense running and weight lifting. I read about P.volve being a gentle yet effective workout program and it piqued my interest. I started with the program by using their free videos on YouTube. In the beginning I could only tolerate 3 minutes a day, but eventually I worked my way up to tolerating 10-15 mins. At that point I downloaded the P.volve app which came with 3 free workouts. I used those until they offered me a good deal to subscribe to the streaming service and I have been a happy streamer ever since.

Equipment

The P.volve equipment is fantastic. I think it adds another level of interest and challenge to the workouts. When I first started, I did it without any equipment and it was still effective. So, if you are first starting out, give it a go without any equipment and see how you like it.

My favorite equipment pieces are: light ankle band, light ankle weight, hand weights, p.ball, and the p3 trainer. I like the light resistance equipment because I can produce a greater range of motion with them. The p.ball is basically an inflatable ball that you strap in between your legs. It’s super weird, I’ll give you that, but it’s awesome. You can do a lot of movements with it in between the legs to work the inner thighs, glutes, and pelvic floor; and by holding it in your hands you can work the arm and pec muscles. The p3 is wild, it is hard to describe. It is an ankle band that you attach to a resistance cord that then attaches to either a weighted ball or a handle, depending on what particular exercise is being done. It works literally everything in a very effective way. P.volve nailed it with the p3, it’s genius.

The workouts

The workouts remind me of physical therapy, but with more unique and interesting moves. They range from 15 minutes up to around an hour. Most fall around the 25-40 minute range, especially the newer videos. P.volve workouts are never boring, even after a year of doing them. I will say, though, that for the most part I prefer the more original videos where P is the trainer. I think they are the most effective workouts with the exception of the new workouts using the p3. To see what the workouts are like in action and to get a good feel for the method check out their YouTube channel.

P.volve with POTS and ME

P.volve has been great for me with POTS and ME. My heart rate stays in the 80’s while I do it, so it is gentle and low-intensity. I have never had a crash from P.volve, which is a difficult feat. I have a milder brand of POTS, so it may not be for all POTS patients. There are a few workouts exclusively on the mat. Those are awesome for the more “potsy” days. Most of the workouts are standing up with last block being on the mat, which is a nice bit of relief. I would imagine for people with severe POTS, P.volve would be too much standing. Another streamer who has POTS does the workouts in a pool to help combat the orthostatic intolerance which is very smart.

Benefits

I have gotten WAY stronger doing the P.volve method. For several months it was the only type of exercise I did. During that time I regained most of the strength I lost during the year I was undiagnosed. It’s crazy to think that just a year ago, my husband had to carry me up the stairs and now I can run up them. Like I said in my exercise post, I started at 30% of normal function before diagnosis and now (September 2019) I am at 50-60% of normal function. At least half of that improvement is attributed to exercise and primarily came from when I was doing exclusively P.volve. I think it is so effective because the movements are functional and translate to real-life movement and strength. An added bonus of P.volve is the muscle definition it creates.

How often/long do I do P.volve

I do P.volve for 20-30 minutes three times per week. I will either do a workout that falls within that time range or do half of a longer workout and finish it up during my next exercise session. As part of the modified Levine exercise protocol I am doing, I alternate days between P.volve and recumbent biking and take Sundays off. I used to do P.volve for longer and more frequent sessions, but I have found through trial and error that this amount works best for me so that my muscles can recover.

Cost

P.volve costs $30 $20 per month (new price updated 10/14/19). The equipment ranges from $15-$90 per piece. There are often promotions on both equipment and subscriptions.

You may use my referral link to get a credit on a subscription. Disclaimer, I also get a credit if you use that link to subscribe.

Have you tried P.volve? How do you like it?

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.