Exercise For Dysautonomia: The PT Perspective

Exercise As A Treatment for POTS/Dysautonomia

Does it really work? An interview with physical therapists who live with dysautonomia.

Postural Orthostatic Tachycardia Syndrome, or POTS, is a form of dysautonomia. In this syndrome, the autonomic nervous system no longer responds appropriately, creating a multitude of symptoms. From fainting when standing to light sensitivity and everything in between, dysautonomia is a complex medical condition that often requires a multi-faceted treatment plan for symptom relief.

One of the more difficult symptoms to manage, standing and exercise intolerance, is often managed by physical therapists trained in cardiac rehab. The most often used POTS rehab program, the Levine Protocol, is a marathon of a rehab program that begins slow, usually with a few minutes of recumbent biking.

Exercise as a treatment option for POTS is difficult because it can take months to see a difference, often worsens symptoms before improving them, and usually requires a lifelong commitment. However, patients who complete the program note a substantial decrease in symptoms.

So how does someone with POTS begin exercise as a treatment? What are the greatest challenges patients with POTS face in undertaking this approach? And most importantly, how effective is this program?

I have gathered a panel of physical therapists to help answer those questions.

However, these aren’t your average physical therapists– they are physical therapists who also have different forms of dysautonomia.

Let’s see their take on exercise for Dysautonomia/POTS:

Chronically Salty: When I was first diagnosed with POTS, the main treatment option recommended to me was the Levine Protocol with a physical therapist (PT). My POTS doctors believe that medication is more of a bandaid and the Levine Protocol is a more long term treatment option. Luckily, Duke has a team trained for POTS specifically, but many patients do not have POTS treatment centers close to them.

How do you find PTs specialized in dysautonomia and if there are none available, what’s the best route to creating a relationship with a PT who can help?

Elli: Most cardiopulmonary PTs will be specialized to treat these types of dysfunctions, but we all learn about the anatomy and physiology of the body in depth in PT school. Find a PT you are comfortable talking to and who you feel actually listens to you and go from there. We spend a lot of time researching for our patients, so if you give us a challenge to help you out, we will find the best evidence based practice treatment for you!  

Dana: A search for outpatient neuro/ vestibular PTs in your area may be helpful. Sometimes Cardio/Neuro/Vestibular PTs may have more of an insight into the Levine protocol specifically, but any PT should be able to help you understand the best way to manage and exercise with POTS. PTs have a great amount of knowledge through schooling and are now required to have Doctorate degrees. When given a patient with POTS, we will be able to appropriately get them started on a treatment program whether the PT is specialized in dysautonomia or not.

Kasia: The best PTs are ones who are constantly learning and pushing themselves to be as knowledgeable as possible. Even if the PT doesn’t have experience treating patients with dysautonomia, such as POTS, he or she will have the medical knowledge and treatment capabilities to do so. Find a PT who’s willing to listen to you and recognizes that you know your body best. The recovery path of someone who has POTS is often not as straightforward as a post-op rehab, so it’s important that your PT fully understands that.

Chronically Salty: What were your first treatment options and what role did exercise play in your recovery?

Elli: I went for 5 years before I was diagnosed with POTS. Due to my medical history, I had high likelihood of heart attack because my heart rate got so high during exercise, so my doctor told me to simply stop exercising until they figured out what was going on. My aerobic capacity (ability of my lungs and heart to handle exercise) was almost zero before I started re-integrating into working out.  

Dana: I was a collegiate cross country and track runner when I was diagnosed. Due to my symptoms, I was not running at the time, so my initial treatment was medication, increasing salt and water intake, use of compression socks, and slow integration back into exercise. Part of my initial treatment was also to avoid caffeine to prevent my heart rate from getting too high. Although it took some time, I was able to get back into collegiate running but it was not quite at the same level I was at prior to being diagnosed.

Kasia: When I was finally diagnosed, I was a collegiate varsity dance team member and the feature twirler for my university. Because of that, I was incredibly lucky to have an athletic doctor, a team of athletic trainers, and a cardiologist who all worked together to help me through the journey. Medication was the first go-to treatment. An increase in salt and fluids was implemented, my diet was adjusted slightly, and all caffeine was cut out (although I had very little to start with). My team knew that for me, dancing, twirling, and exercise in general had to stay a part of my life, so modified lifting and cardio were a big focus for my treatment. My activity levels were cut back, and I was monitored closely. A specific protocol wasn’t implemented, but upright, level-changing exercise was limited.

Chronically Salty: How long did it take for exercise to start feeling like it helped?

Elli: It was a LONG, SLOW road. I was at basically zero tolerance for exercise by the time my doctor would allow it, and could barely navigate a flight of stair without getting winded. It took 2 months for me to start really seeing improvement in my ability to breathe during and after aerobic activity.

Dana: As far as a timeline goes, the amount of time is going to be different for everyone. There are varying severities and types of POTS. For me, it was a slow progression. At the time of my diagnosis, I had a very strong support system of my college teammates, family, and my boyfriend (who is now my husband) who were constantly there for me when it got physically and mentally challenging. I recommend having someone other than your PT to talk though your progression with, as it can be mentally tough when you are struggling to do something that you did with such ease earlier.

Kasia: For me, exercise wasn’t so much the recovery journey, as it was the end goal. Returning to my prior level of activity (which was high, and involved lots of exercise) was my goal. In terms of straight exercise, it was incredibly tough at first. There were days when showering used up half my spoons for the day (the spoon theory is a great technique to use for patients with any form of dysautonomia), so exercise wasn’t going to happen. It took about a year to really start feeling like I was the one in control again, and that POTS wasn’t controlling me.

Chronically Salty: What surprised you from a patient perspective about exercise with POTS that you didn’t think about as a PT?

Elli: As PTs we are good at following protocols and treating our patients with the best intentions of making them better. As a POTS patient doing exercises, I really connected with my patient on a sympathetic level and I think these shared experiences has made me a better PT.  

Dana: As a PT, I am always pushing and motivating my patients. Whereas POTS is not something you can physically see such as a broken bone or surgical scar, I was concerned that my physicians did not understand what I was feeling. Since simple tasks would make me symptomatic, I was worried that others thought I was fabricating symptoms.  As a result of my experiences with POTS, I can understand my patients’ symptoms, even when they are not visible and I can therefore adjust my treatment accordingly.

Kasia: I was incredibly lucky to have a medical team who really understand POTS, but I know that’s not always the case. For any type of medical diagnosis that is harder to be seen from the outside, it’s crucial to always listen to your patient. With POTS, the exercise and the resulting reaction/result don’t always line up. As my POTS became more manageable, there were days I could go on team runs, but could barely make it up a flight of stairs. Trusting your patients, and believing that what they’re saying really is how they’re body is reacting, is crucial.

Chronically Salty: What were your biggest challenges in using exercise as a medication? What would the PT in you say about them?

Elli: I am not a patient person and really wanted to push myself to get back to being the athlete I once was before. But slow and steady wins the race with POTS.  

Dana: The biggest challenge to exercising with POTS is staying on a schedule and remaining consistent. I think that’s the hardest challenge for anyone who is trying to start a new exercise program. As a PT, I see a lot of patients that have a hard time staying consistent with their home program. I will sometimes make calendars for my patients, encourage them cross off the days they did their exercises, and have them bring back the calendar to keep them accountable. The advice I give a lot of my patients is that I am here for YOU. YOU are the one who is going to benefit from exercise, if you don’t stick with it then how do you expect to get better?

Kasia: Just like with any patient, follow through with programs, specifically home exercise programs, can be quite difficult. Starting a new exercise program and beginning a new lifestyle change, is a big commitment and is often so daunting. Progress doesn’t come quickly, and that’s frustrating for many people. Patient education and encouragement regarding exercise as a medication is crucial.

Chronically Salty: What would be your best piece of advice be for patients starting the Levine Protocol or another exercise regime for POTS/Dysautonomia?

Elli: START SLOW, but PUSH YOURSELF. Try something that is a little bit hard for you each day. You don’t need to torture yourself to get to a healthy point, but you do need to challenge yourself.

Dana: My best advice is be patient. It is going to take time, so don’t get frustrated and keep your support system close. Listen to your physicians and follow the advice they give you. Listen to your body, if you know something will make you too symptomatic, find another way to do it.

Kasia: The path is long, slow, frustrating at times, and has its ups and downs, but do not give up. Like anything in life, good things take time, and it’s worth it in the end. Keep open communication with your medical team; follow their guidelines, but also check in with them and let them know how you’re doing too. Listen to your body, because every day will be different. At some point, you’ll notice the good days are outweighing the bad.

Chronically Salty: From a medical professional’s perspective, how effective are programs like the Levine Protocol? From a patient’s perspective, is it worth it for you?

Elli: I am now back to skiing and climbing on my days off at a relatively high level, and have gotten other patients back to their activities they love as well. It is hard work. You feel like your body doesn’t want to help you and you will have days that make you want to give up. But these protocols do work if you work them! Be positive, challenge yourself, communicate with your PT, and be honest with yourself about what your outcomes will be.

Dana: I don’t feel that I will ever be back to the elite level athlete I once was before POTS. My body battles with me because it doesn’t want me to get my heart racing, but I battle it right back using these protocols and exercise and I am happy I can get out and do what I love because of that.

Kasia: It is absolutely worth it! POTS cannot  not “cured,” but its symptoms can drastically be decreased and you can often return to many prior activities … and even some new ones! The first year after my diagnosis was so difficult. There were times I wanted to give up, because nothing seemed to truly be working; that’s part of the journey of battling a form of dysautonomia. I look back and am amazed at far I’ve come since then. Now at almost 6 years post diagnosis, I’m actually in the best shape of my life, I’m so much healthier, and I’m exponentially happier.

Interested in learning more about physical therapy, chronic illness, and dysautonomia?

Check out these articles:

1. How the Levine Protocol Improved My POTS/Dysautonomia
2. The Levine Protocol: What It is and How It Helps POTS
3. Even Top Athletes Can Get POTS: A Physical Therapist’s Personal Journey with Dysautonomia
4. Athletes with Dysautonomia: Tips and Tricks to Battling POTS
5. Why You Shouldn’t Overlook Physical Therapists
6. What is Physical Deconditioning with a Chronic Illness?