Managing POTS through Exercise

Many people with postural orthostatic tachycardia syndrome (POTS) feel miserable all of the time.  The idea of exercising is almost insulting when you are highly symptomatic, and actually exercising feels like an impossible task.  The fatigue from POTS is excruciating and is often accompanied by unremitting heaviness and pain in the legs. Although it may be the last thing you want to do, exercise is an important part of the overall plan to a better quality of life.

ExerciseStudies have shown that a couple of factors are important for people with POTS who start to exercise.  In at least a cohort of people with POTS, deconditioning from lack of general movement and exercise can exacerbate the symptoms of illness.  Some of Dr. Levine's studies have demonstrated a lower stroke volume (amount of blood pumped out of the heart in each beat) and smaller size of the heart in people with POTS.  He dubbed this phenomenon the "Grinch Syndrome" after the Dr. Seuss character.  Exercising can help to increase both the stroke volume and overall heart size to normal levels. Dr. Levine emphasizes that the position of your body during exercise is important.  Upright exercises like using a treadmill or riding a stationary bike can be worked toward after a month or more of more horizontal position exercise.  As always, be sure that you discuss your exercise regimen with your physician to be sure that it is safe for you.

Build up the number of minutes spent exercising very slowly. Many with POTS have exercise intolerance and orthostatic intolerance.You might start with five minutes on a recumbent bike. Do five minutes for five days a week, and then add one minute to the exercise regimen per week. Eventually, you want to build up to 30 minutes per day for three days per week. This is a long, tough road, but it may eventually pay off. A little exercise every day is better than none at all.

Start with recumbent aerobic exercises. Consider purchasing a recumbent stationary bike or rowing machine. If you have access to a pool, swimming is an excellent source of exercise. We actually see my daughter's personality more when she is in the pool than any other time - likely from the coolness of the water and its weight acting as compression.  We have also experimented with Pilates exercises that don’t require standing. Exercise doesn’t have to be vigorous. Find something fun. We sometimes use the Wii Dance programs, and my daughter sits in a chair and moves her arms with us (and usually wins!).

Mix strength training with aerobic exercise.  Two days per week should be devoted to strength training of the legs and core.  Focus on exercises that can be done in a chair or on the floor, like a seated leg press, leg curl, leg extension, calf raise, chest press, and seated row.  Exercises for your core might include abdominal crunches, back extensions, and side planks.  Any Pilates exercises that do not require standing would work well on these days.  To do this at home, you might consider purchasing resistance bands and/or a physioball.

Use a reward system. Consider using a visual means to see how much you exercise over time.  In our family, we put beads in a clear cup for every five minutes of areobic or resistance exercise.  Since we typically do between 15 and 25 minutes, the kids put three to five beads in per exercise session. It is encouraging to see the beads (marbles, pennies, etc.) build up in the cup over time.  These beads can be traded in for video games, articles of clothing, or whatever reward they want.  They love it!

Exercise to tackle insomnia. If sleep is an issue, exercising in the late afternoon or early evening is the best time to combat insomnia.

There is an exercise protocol that has been developed for people with POTS.  Consult your doctor before trying it.  It doesn't work for everyone, but has been a godsend for many.  

CHOP Modified Dallas POTS Exercise Program