How the Levine Protocol Improved My POTS/Dysautonomia

Doctors always seem to say that exercise is the key to everything. Is that true with POTS/Dysautonomia?

The Levine Protocol is a progressive, cardio-based exercise regime that can improve symptoms of exercise and standing intolerance in people with POTS/Dysautonomia. The program, developed by Dr. Levine, is available through your cardiologists or physical therapists. You can also read about it in detail here.

So, exercise for POTS and Dysautonomia… thoughts?

You are probably thinking that your Dysautonomia is so bad, even thinking of exercising exacerbates your symptoms.

Trust me, I feel you. I thought the same.

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Seriously? You want me on a bike when I can barely stand?!?

But I think the main barrier to physical therapy exercises for Dysautonomia is our mindset about it. We are imaging ourselves doing the same types of exercises we used to before we got Dysautonomia, but now with Dysautonomia. That, my friends, would be a hellscape.

I like to think about exercising with Dysautonomia as me tricking my brain into doing it. Every step of this protocol has been me telling my brain, you can do this! Moving my feet in an excruciatingly slow circle on a recumbent bike is not the same as running away from a raptor in Jurassic Park.

My brain didn’t believe me at first, of course.

When I showed up for my first day of physical therapy for POTS, I knew what I was going into. My brother, a physical therapist himself, had excitedly thrown the massive Levine Protocol document on my hospital bed when I was first diagnosed. It looked extremely daunting, but he promised it would help. If you think about it, Heidi, it makes so much sense why this will help.

We bond over talking about things like my physiology classes, so I knew where he was getting with this.

But STILL. The rational part of my brain knew that I needed to get on that bike and that I needed to get on it fast. The irrational part of my brain was looking at my heart monitor and seeing the 100+ BPM sitting to standing heart rate difference.

So I braved up and looked at the packet. The Levine Protocol is actually incredibly simple. It is a seven-month exercise plan that has two “pre-month” plans for people who have more severe symptoms. In the beginning, you start with a warm-up, then complete a base pace (period of harder exercise), then finish with a cool down. You start slow, simple, and most importantly, recumbent.

The Levine Protocol is intense, in that in a seven to nine-month span, you could, theoretically, go from biking for 10 minutes on the recumbent bike to running.

But don’t let that scare you.

The purpose is to increase orthostatic tolerance by slowly building muscle and tolerance to aerobic exercises. You start recumbent and slowly move to upright machines. You also spend time working on strength training.

All these things are great, but the most important aspect of this program is to not get hung up on how long it takes you to get through it.

I have worked on the Levine Protocol for three-four days a week for almost two years. I am still in month four. I have been stuck in month four for a good six months. But that’s life. Do I think it’s worth all the stress? DEFINITELY.

Let’s backtrack to my first day in physical therapy for some perspective.

When I began physical therapy, I started with one on one sessions with a physical therapist who had seen their fair share of POTS patients. I was not unique by any means, except that I wasn’t taking any medication for POTS yet.

I have a heart arrhythmia unrelated to POTS, so they hooked me up to their portable EKG machine and started me on the recumbent bike. My first workout? Lasted less than two minutes before they told me to lay on the floor… for the next 45 minutes.

How in the world was I to even get to pre-month one if I could barely do two minutes?

Slowly and steadily.

Each workout was stressful and exacerbated my symptoms, leaving me exhausted for the next few months. My life was physical therapy. There are times where I didn’t want to go, but luckily, I have a mom that didn’t allow me to give up.

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What body thought I was doing– some intense backpacking in Alaska, not slowly biking

After a few months and completing pre-months 1 and 2, I suddenly realized that I wasn’t as exhausted after workouts. Sometimes, I even felt better after workouts. I could start cooking a whole meal on my own, be left alone at home for hours, and even shower without feeling like I was dying.

I wish I could say that my POTS recovery was an upward journey from there, but I would be lying to you. As my physical therapist told me, recovery with POTS is like the stock market– it goes up over time, but there are dips and crashes in between.

So why spend all this time on exercise? Because it helps you recover from the crashes faster.

It also shows you that progress can happen with POTS. When you have bad days and have to crawl on the ground just to get to the bathroom, you can think to yourself, this SUCKS. But I’ve been here before and I’ve made it out. Yes, it is soul-crushing when you work so hard and end back up where you started. But this time, you have proof that it can get better.

Soon enough, I was on month one of the Levine Protocol, then month two. I was able to start working part-time. I could live alone, clean my house, and do laundry. I even started making my bed. Suddenly, even ironing my clothes and putting on makeup didn’t seem like moving mountains.

When I started month three, I started using the rowing machine. Previously, I wasn’t able to go from laying down to sitting without using my hands because my abdominal muscles were so weak. I realized that part of my standing intolerance was due to muscle weakness, versus the tachycardia. At first, using the rowing machine was incredibly difficult, but as my body became more used to it, I saw some amazing results.

I found that I could sometimes stand for over an hour while cooking. I was bending up and down getting ingredients and moving pans in the oven. I was washing my dishes afterward. I was even dancing sometimes to music while doing all of this.

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My strength-training essentials

Remember when I talked about my first day at physical therapy? After a mere two minutes on the bike, I had to spend 45 minutes laying down to recover. Now, I often finish a 50-minute workout, sit a few minutes while drinking water, then go right to cooking my dinner, dancing along to Enrique, because why not?

It took me two YEARS to get to this point. No matter what is going on in my life, I am committed to the Levine Protocol. It takes GRIT, resilience, and a life-long commitment. It requires you to spend weekends resting and can push you to your limits, both mentally and physically. But for me, it is worth it.

Exercise for POTS is not for everyone, but it is definitely worth discussing this option with your cardiologist.

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The most important thing you need for the Levine Protocol: An “I got this” attitude.

Interested to learn more about exercise for POTS and other Dysautonomias? Read these articles for a more detailed look at the protocols available and to see what physical therapists with POTS think:

Even Top Athletes Can Get POTS: A Physical Therapist’s Personal Journey with Dysautonomia

Athletes with Dysautonomia: Tips and Tricks to Battling POTS

What is Physical Deconditioning with a Chronic Illness?

Why You Shouldn’t Overlook Physical Therapists

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