Dr. Levine's Exercise Protocol for POTS: The Beginning

Considering it's a new year, what better time to embark on my 3-month exercise journey? Truth be told, I would have loved to have started this protocol about 6 months ago but it was difficult to get a hold of Levine's associates in Texas about the study and by the time I finally got the info from them I was sick again. Now that my awful sinus/ear infection and stomach issues are better, I have started Levine's protocol. So far, so good although I will say 50 consecutive minutes on a recumbent bike with a high heart rate is anything but easy.

Last night I rode just over 18 miles at an average speed of 21 miles per hour, averaged a heart rate of 136 with a peak heart rate of 149, and burnt a total of (only!) 323 calories according to my bike. It seems to me after 18 miles I probably burnt way more calories than that! I have the bike set up in the living room although I find it tough to focus on television while I'm riding. In fact, during intense exercise like that I find it's actually much easier to just shut my eyes as they tend to get really dry when I exercise. Anyone else experience that/know what causes it?

So I strapped on my heart rate monitor and ipod, closed my eyes and went to work. In 50 minutes I managed to listen to a new favorite of mine, Anna Nalick's 'Broken Doll & Odds & Ends.' I am going to use music to motivate me and listen to a different artist each exercise session as 50 minutes is usually long enough to listen to a complete album in its entirety.

Today I am supposed to be doing weight training according to the schedule that Levine's folks created for me. I suppose I should do that soon although I am still tired from yesterday and my knees are a bit sore. I cannot reveal any specifics of the program, but I believe each workout plan is tailored to your individual heart rate so my regime may look different from the next person's anyway.

If you have any interest in trying the program, I would recommend contact Dr. Levine's associates as soon as possible as it may take months before you are accepted into the study to begin. If you test positive for POTS according to a simple 10-minute stand test (much easier than a tilt-table test!) performed and recorded by your doctor in the office, you will most likely be accepted into the study and receive your own customized workout regime and schedule based on your resting and standing heart rates.

I still have a few questions I need to run by Levine's people. For instance, does it matter if I wear compression stockings while exercising? What if I can't get my heart rate up high enough into the zones that I'm supposed to be working in? So far it has been a real challenge for me to even get my heart rate up into the 140's while exercising (I can achieve that hr standing still, no problem, but riding the bike is much harder).

I am going to go do my exercises now before it gets any closer to bedtime. Please let me know if you have any suggestions for music! I will listen to just about anything and enjoy listening to stuff I've never heard before. Going to try to make this exercise journey as painless, fun and interesting as possible. The possibility of feeling better is motivation enough I just think music will help the time go much faster.

For your listening enjoyment, here is one of my favorite Anna Nalick songs, 'Shine.' One of my favorite lyrics is, 'Isn't it time you got over how fragile you are?' It definitely resonated with me for obvious reasons. I'm fragile, but it's up to me to make myself stronger.



I am also interested to hear if anyone has tried Levine's protocol or a different exercise regime and hear about your results, how you felt, what to expect, etc. Wish me luck! I intend to post regular updates about my exercise experiences and progress.

Exercise: Friend or Foe?

If you asked me whether or not I would be exercising after I first got sick, the answer would have definitely been no. I could barely walk from room to room without getting weak and winded. Chronic tachycardia will have that effect on a person. I couldn't take the stairs on my college campus, instead I had to rely on elevators and even then it was a stretch just to get myself from class to class. This was all before my POTS diagnosis of course.

My EP kept urging me to join a gym and just start slowly on bikes and weights. For a long time, I ignored his advice. I then stumbled upon a blog about a research study in Texas on exercise and the POTS patient. I was intrigued. I immediately contacted the blogger and the research associates but never heard back, so I am unclear what Dr. Levine's specific exercise protocol is, but the blog mentions recumbent bicycling, swimming, rowing machines and weights. So, I did some research, and started exercising at a nearby rehab facility. Since Dr. Levine's specific protocol was not revealed online, the owner designed an exercise regime specific to my needs. He performed an EKG, blood pressure readings, and a test called the BioZ that measures cardiac output, stroke volume, and things of that nature. He said the always reassuring, "I've never seen anything quite like this before," in reference to my off-the-charts BioZ test results. He then performed the BioZ test again five minutes after exercise and my results were encouraging: everything had come back into a normal range. He concluded that I need to exercise in order to keep my circulation going. And I believe he is right. However, in the beginning, I couldn't tolerate any exercise. But now that I have gotten my condition somewhat under control through salt, fluids, and the occasional beta blocker, I am able to do certain exercises and movement really does make me feel better.

If I don't exercise for a couple days, I start to notice the effects on my body. When I am diligent about my exercise routine, I am much less lightheaded and suffer fewer woozy spells. I purchased a recumbent bike to use at home and ride anywhere between 5 and 10 miles every other day at a low to moderate resistance setting. If I ride it a bit each day, I tend to feel better. However I think it's important to take a day off the bike here and there to let my muscles recover. I try to do light weights with high reps 2 to 4 times a week for about twenty minutes at a time as well. I do some leg work, abs, back, and shoulders. I have definitely noticed an improvement in my muscle tone and I am a bit stronger overall. An occasional pilates workout provides a nice diversion from my standard routine and if I am experiencing worse than normal brainfog I turn to yoga, as it enhances bloodflow to the brain because of all the inversions. Lately I have not been devoting as much time to exercise as I should be, and I can feel it. My woozy spells are indeed motivation to get back to the gym.

As with any exercise regime, please consult your doctor before beginning. Exercise can be a positive experience that improves circulation, muscle tone, and creates natural mood-boosting endorphins. Take it slow, if exercise causes you any abnormal or unbearable pain or discomfort, stop and revise your regime. Don't feel pressure to exercise for hours per day. Sometimes just minutes will do the trick; some exercise is always better than none at all. My best advice is to start all exercise in the recumbent position, doing leg lifts on the ground or from bed if that is all you can tolerate. Don't push yourself too hard. Monitor your heart rate and blood pressure throughout, at least in the beginning. Your stamina should increase over time. Be patient with your body, and most importantly, listen to it. Do not exercise to the point of exhaustion. Start with brief bursts of exercise and wait and see how your body responds the next day. Over time you may experience a noticeable improvement in your symptoms as I have. Exercise has quickly become one of my best friends.